Painful Choices About a Safe Space

By Cynthia Toussaint, PNN Columnist

It’s no secret. For me, there’s no better medicine than self-care.

To that point, I’m a proud member of my local YMCA. In fact, it’s been my ultimate safe-space for 15 years: around the block, accessible, a generous lap swimming pool, topped by a loving community of warm and caring people. A lot of perfect for someone who can’t walk a block due to Complex Regional Pain Syndrome, but can swim a mile.

To give back some, I’ve done quite a bit of fundraising to provide low-cost memberships for families in need, and landed one of the Y’s aquatic teachers a national ABC News print piece, the angle being the benefits of pool therapy for women in pain as I believe devotedly in the healing power of water.

All was going swimmingly, until COVID. When we returned in mid-2021, my heart sank when I spied a new member, Annie, who I sensed was going to be trouble with a capital T. What little lap swimming she did was overwhelmed by her excessive yelling and joke-telling mid-pool with the lifeguard.

Day after day, I became increasingly stressed while others rolled their eyes and donned ear plugs. To make matters worse, Annie soon blew past personal boundaries by jumping in on my conversations, often physically pulling friends away from me. My place of serenity was turning into a high-decibel scrum.      

CYNTHIA TOUSSAINT

It dawned on me that what was driving Annie’s aberrant behavior was a boatload of childhood trauma. She was deregulated and manic, showing earmarks of a deeply wounded woman. Annie flouted pool rules by wearing inappropriate, oversexualized swimwear (shorts and a braless t-shirt) with no cap for her long, black locks.

In one of the few encounters with Annie before things went south, she boasted about freezing her brother out, emphasizing all the legal folk he had to circumvent to get to her. Annie’s cackle as an exclamation point, her pure joy of hurting another person, was darkly disturbing.                     

One day, out of the blue, a deep freeze set in as Annie began avoiding me. This was terribly awkward, compounded by the Y pool and dressing room being an intimate place where everyone knows everyone’s business. I continued basic pleasantries until Annie yelled me down for doing so.

Next day, in an attempt to fix things, I asked Annie if I’d done something to offend her. Without looking my way, she briskly responded, “No, nothing’s wrong. We’re fine.” But I knew better.

Bad turned to worse when, at that point, Annie completely shut me out. It was as though I didn’t exist as she avoided eye contact altogether. This tactic was deeply uncomfortable and hurtful as she appeared to be in good standing, even sweet, with others. 

Due to Annie’s puzzling cruelty, I started dreading going to my “safe space.” My lower-body pain amp’d and my nervous system was in fight or flight mode before I’d head out to the Y. Even my anticipation the day prior was becoming unhealthy, and I often woke in the night with worry.

Because I couldn’t bear to lose my beloved pool and community, I went to a therapist whose assessment provided strong insight. She suspected Annie was “negatively transferring,” meaning that because I remind her of an abusive person in her childhood, she’s delusional about my power over her. My psychologist advised that this is a targeted psychotic process and, for safety sake, I swim elsewhere.  My close friends seconded that emotion. 

With heavy heart, I tried other Ys and fitness centers. In the end though, none of them worked because of my pain and limitations, e.g., I had to use my wheelchair to get to the pool, there were no exit stairs, and/or my partner and caregiver John couldn’t run necessary errands because we were far from home.

When I fearfully returned to my now toxic Y, John accompanied me in the pool to rehab an injury and offer support in the event of an encounter. Annie’s behavior immediately escalated when she spread a nasty rumor about me to a fellow swimmer who I adore. Zoe shared the gossip out of concern for my well-being, along with being disturbed by the grim energy now shrouding our community.

Before entering the pool the next day, Annie yelled at me twice and, for the first time, physically threatened me by raising her hand to my face. That was it. I went to member relations and made a thorough complaint. Luckily, Zoe, who’d witnessed the happenings, made one as well.

Fortunately, since the Y spoke to Annie, her behavior has simmered. While still avoiding conversation and eye contact, she’s not threatening me, though I’m aware her anger’s just below the surface. Better, but far from okay. What was once heavenly, now casts a pall.

If I was a fully functional person without high-impact pain, I’d have left this Y many moons ago and created a healthy community elsewhere. But because of limitations and specific needs, my only choice is to tolerate an unsafe, dysfunctional situation, to make the best of a bad.

Let’s face it. My choice was really no choice. And that’s the way it is with folk hammered by pain and disability. Pickings are slim and the best solutions are generally the ones that are physically do-able. This not only applies to our places of exercise and community, but also where we live, shop and work. Really, everything we do.   

But let’s not let a bully bury the lead. Come hell or high water, I’m continuing to swim, which is one of the best self-care cards I hold. And when it comes to wrangling with the pitfalls of pain and chronic illness, holding onto what health we can maintain and preserve, is always our best choice.               

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and multiple co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

U.S. Healthcare System Isn’t Ready for Surge of Disabled Seniors

By Judith Graham, KFF Health News

The number of older adults with disabilities — difficulty with walking, seeing, hearing, memory, cognition, or performing daily tasks such as bathing or using the bathroom — will soar in the decades ahead, as baby boomers enter their 70s, 80s, and 90s.

But the health care system isn’t ready to address their needs.

That became painfully obvious during the covid-19 pandemic, when older adults with disabilities had trouble getting treatments and hundreds of thousands died. Now, the Department of Health and Human Services and the National Institutes of Health are targeting some failures that led to those problems.

One initiative strengthens access to medical treatments, equipment, and web-based programs for people with disabilities. The other recognizes that people with disabilities, including older adults, are a separate population with special health concerns that need more research and attention.

Lisa Iezzoni, 69, a professor at Harvard Medical School who has lived with multiple sclerosis since her early 20s and is widely considered the godmother of research on disability, called the developments “an important attempt to make health care more equitable for people with disabilities.”

“For too long, medical providers have failed to address change in society, changes in technology, and changes in the kind of assistance that people need,” she said.

Among Iezzoni’s notable findings published in recent years:

Most doctors are biased: In survey results published in 2021, 82% of physicians admitted they believed people with significant disabilities have a worse quality of life than those without impairments. Only 57% said they welcomed disabled patients.

“It’s shocking that so many physicians say they don’t want to care for these patients,” said Eric Campbell, a co-author of the study and professor of medicine at the University of Colorado.

While the findings apply to disabled people of all ages, a larger proportion of older adults live with disabilities than younger age groups. About one-third of people 65 and older — nearly 19 million seniors — have a disability, according to the Institute on Disability at the University of New Hampshire.

Doctors don’t understand their responsibilities: In 2022, Iezzoni, Campbell, and colleagues reported that 36% of physicians had little to no knowledge of their responsibilities under the 1990 Americans With Disabilities Act, indicating a concerning lack of training. The ADA requires medical practices to provide equal access to people with disabilities and accommodate disability-related needs.

Among the practical consequences: Few clinics have height-adjustable tables or mechanical lifts that enable people who are frail or use wheelchairs to receive thorough medical examinations. Only a small number have scales to weigh patients in wheelchairs. And most diagnostic imaging equipment can’t be used by people with serious mobility limitations.

Iezzoni has experienced these issues directly. She relies on a wheelchair and can’t transfer to a fixed-height exam table. She told me she hasn’t been weighed in years.

Among the medical consequences: People with disabilities receive less preventive care and suffer from poorer health than other people, as well as more coexisting medical conditions. Physicians too often rely on incomplete information in making recommendations. There are more barriers to treatment and patients are less satisfied with the care they do get.

Discrimination in Healthcare

Egregiously, during the pandemic, when crisis standards of care were developed, people with disabilities and older adults were deemed low priorities. These standards were meant to ration care, when necessary, given shortages of respirators and other potentially lifesaving interventions.

There’s no starker example of the deleterious confluence of bias against seniors and people with disabilities. Unfortunately, older adults with disabilities routinely encounter these twinned types of discrimination when seeking medical care.

Such discrimination would be explicitly banned under a rule proposed by HHS in September. For the first time in 50 years, it would update Section 504 of the Rehabilitation Act of 1973, a landmark statute that helped establish civil rights for people with disabilities.

The new rule sets specific, enforceable standards for accessible equipment, including exam tables, scales, and diagnostic equipment. And it requires that electronic medical records, medical apps, and websites be made usable for people with various impairments and prohibits treatment policies based on stereotypes about people with disabilities, such as covid-era crisis standards of care.

“This will make a really big difference to disabled people of all ages, especially older adults,” said Alison Barkoff, who heads the HHS Administration for Community Living. She expects the rule to be finalized this year, with provisions related to medical equipment going into effect in 2026. Medical providers will bear extra costs associated with compliance.

Also in September, NIH designated people with disabilities as a population with health disparities that deserves further attention. This makes a new funding stream available and “should spur data collection that allows us to look with greater precision at the barriers and structural issues that have held people with disabilities back,” said Bonnielin Swenor, director of the Johns Hopkins University Disability Health Research Center.

One important barrier for older adults: Unlike younger adults with disabilities, many seniors with impairments don’t identify themselves as disabled.

“Before my mom died in October 2019, she became blind from macular degeneration and deaf from hereditary hearing loss. But she would never say she was disabled,” Iezzoni said.

Similarly, older adults who can’t walk after a stroke or because of severe osteoarthritis generally think of themselves as having a medical condition, not a disability.

Meanwhile, seniors haven’t been well integrated into the disability rights movement, which has been led by young and middle-aged adults. They typically don’t join disability-oriented communities that offer support from people with similar experiences. And they don’t ask for accommodations they might be entitled to under the ADA or the 1973 Rehabilitation Act.

Many seniors don’t even realize they have rights under these laws, Swenor said. “We need to think more inclusively about people with disabilities and ensure that older adults are fully included at this really important moment of change.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Blacks and Hispanics More Likely to Develop Chronic Back Pain

By Pat Anson, PNN Editor

Chronic lower back pain is the leading cause of disability worldwide, with an estimated 72 million people suffering from it in the United States alone.   

New research suggests that Black and Hispanic Americans are significantly more likely to develop “high-impact” lower back pain than Whites. High impact pain is chronic pain that lasts at least six months and is severe enough to interfere with daily life or work activities.

Researchers at Boston Medical Center analyzed health data for over 9,000 patients experiencing acute lower back pain, who were being treated at primary care practices in the Baltimore, Boston, Pittsburgh and Salt Lake City areas.

After six months, patients who were Black (30%) or Hispanic (25%) were more likely than White patients (15%) to develop high impact chronic lower back pain. The Black and Hispanic patients were more likely to be younger, female, obese, have Medicaid insurance, and at higher risk of disability. They were also about half as likely to be prescribed opioids than Whites after their initial visit to a doctor.

“Our study has highlighted both a concern in the absolute number of patients with acute low back pain who develop chronic low back pain and concerns about racial and ethnic disparities in outcomes,” said lead author Eric Roseen, DC, director of the Program for Integrative Medicine and Health Disparities at Boston Medical Center.

“High-impact chronic pain has a negative impact on the lives of millions of Americans, particularly Black Americans, yet possible and significant causes of racial and ethnic disparities in long-term pain outcomes remain understudied and largely unaddressed. The disparities that emerged in this study shed light on the direct correlation among lived experiences, physical, and mental health, which must be addressed in order to improve patient outcomes.”

Roseen and his colleagues reported in the journal Pain Medicine that the risk of developing high-impact chronic pain was highest among Black women. They attribute that partially to socioeconomic reasons, suggesting that racial and ethnic differences in health insurance or neighborhood resources may impact the long-term outcomes of patients with new episodes of low back pain. 

Getting effective treatment for low back pain is problematic, regardless of race or ethnic group. A recent Harris Poll of over 5,000 U.S. adults found that over a third of those with chronic low back pain have never been told by a healthcare professional what causes their pain. Nearly half said they’ve experienced back pain for at least five years.

The survey found the typical back pain sufferer had sought relief from at least three different healthcare providers. About one in five had epidural steroid injections, which were rated as one of the least effective treatments for chronic low back pain. Opioid pain medication was rated as the most effective treatment, slightly ahead of physical therapy, chiropractic care and acupuncture.

People With Long Covid Face Barriers to Getting Disability

By Betsy Ladyzhets, Kaiser Health News

When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of work for two years and put her family at risk for eviction.

Taveras, a mother of two in Brooklyn, New York, said her bout with long covid has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.

“We are in the midst of possibly losing our apartment because we’re behind on rent,” said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.

Like many others with long covid, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, insufficient legal support, and a lack of clear guidance on how to prove they are disabled — compounded by the challenges of a medical system that does not have a uniform process for diagnosing long covid, according to health experts and disability attorneys.

The Biden administration promised support to people with long covid, but patient advocates say many are struggling to get government help.

The Centers for Disease Control and Prevention defines long covid broadly, as a “range of ongoing health problems” that can last “weeks, months, or longer.” This description includes people, like Taveras, who cannot work, as well as people with less severe symptoms, such as a long-term loss of smell.

The Social Security Administration has identified about 40,000 disability claims that “include indication of a covid infection at some point,” spokesperson Nicole Tiggemann said. How many people with long covid are among the more than 1 million disability claims awaiting processing by Social Security is unknown.

In recent months, about 5% of new disability claims filed by Allsup, an Illinois-based firm that helps people apply for Social Security, involved people dealing with covid, said T.J. Geist, a director at the firm. Other firms report similar figures.

The long waits for disability assistance often end in denial, in part because long covid patients don’t have the substantial medical evidence that federal officials require, Geist said. There is no standard process for diagnosing long covid. Similarly, Social Security “has yet to give specific guidance on how to evaluate covid claims” for the government officials who review applications, he said.

A recent report from the Brookings Institution estimates that 2 million to 4 million people are out of work because of long covid. A study published in September by the National Bureau of Economic Research puts the number at 500,000.

Advocates suggest that many people with long covid have yet to recognize their need for government benefits and could start applying soon.

“I did not understand that I was disabled for four years because my ability would fluctuate so much,” said Alison Sbrana, a patient-advocate with the long covid support group Body Politic. She has a chronic disease whose symptoms are similar to long covid’s in many cases and has received Social Security disability payments for several years.

“If you apply my timeline to people with long covid, even people who got sick in early 2020, we’re not going to know the full extent of their ability to work or not until 2024,” she said.

Difficult Application Process

In July 2021, the Department of Health and Human Services formally recognized long covid as a disability. Expanding on the recognition, the department and the White House published a report in August 2022 that summarizes the “services and supports” available for people with long covid and others who have experienced long-term impacts from the pandemic.

But accessing support is not as simple as White House announcements may suggest. First, the July 2021 guidance recognized long covid under the Americans with Disabilities Act but didn’t extend to the Social Security Administration, which runs benefit programs.

Under the ADA, long covid patients who can still work may ask their employers for accommodations, such as a space to rest or a more flexible schedule, said Juliana Reno, a New York lawyer who specializes in employee benefits. Social Security, however, has more stringent standards: To receive disability insurance, people must prove their long covid symptoms are so debilitating that they cannot work.

“The application process is very demanding, very confusing for patients,” Sbrana said. “It also entirely depends on you having this substantial breadcrumb trail of medical evidence.”

Most applications are denied in the first round, according to Sbrana and other advocates. Patients typically appeal the decision, often leading to a second denial. At that point, they can request a court hearing. The entire process can take a year or more and usually requires legal assistance.

The pandemic extended these wait times, as Social Security offices closed and did not quickly shift to remote operations. Moreover, common symptoms such as brain fog can make filling out online applications or spending hours on the phone with officials difficult.

Long covid patients who were hospitalized with severe symptoms can submit paperwork from those hospital stays and are more likely to receive benefits, Geist said. But for the people who had mild cases initially, or who have “invisible-type symptoms” like brain fog and fatigue, Geist said, documentation is more difficult. Finding a doctor who understands the condition and can sign off on symptoms may take months.

Amanda Martin, a long covid patient and advocate, is one of those lost workers. Martin got covid in April 2020 while working as a subcontractor for the U.S. Navy and lost that job when they were unable to recover quickly.

At first, unemployment benefits provided support, but Martin’s symptoms — including intense fatigue and brain fog — continued. More than two years after the initial infection, Martin is still “on bed rest 90% of the time,” they said. Martin receives food stamps and Medicaid but doesn’t have help paying for other essentials, such as gas. Their application for federal disability benefits has been denied twice.

“I am currently a year into the [application] process; I have eight to 11 months remaining,” Martin said. “I have $50 in my savings account.”

Many people with long covid don’t have the financial resources to hire a lawyer — or access to a doctor who can help with their documentation, which makes the situation even tougher.

Patient advocacy organizations are pushing for a more efficient application process, specific guidance for officials who evaluate long covid cases, and faster eligibility for Medicare coverage after a disability application is approved. (The typical wait is two years.)

The organizations also serve as support groups for people with long covid, sharing resources and providing reassurance that they aren’t alone. Some organizations, such as the nonprofit Blooming Magnolia, even collect funds for direct distribution to people with long covid. But patients say these efforts don’t come close to the scale of funding needed.

Taveras, the Brooklyn mom, said she knows many other people who are grappling with similar issues. “We’re trying to get support from the government, and we’re not getting it,” she said. Taveras set up a GoFundMe page to request support for her family.

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

My Renewed Fight for Disability

By Mia Maysack, PNN Columnist

There are millions of people who are figuratively standing in line, waiting to be granted benefits under Social Security Disability Insurance or SSDI. It usually begins with a person filing a disability application on their own behalf, declaring that they are unable to work, followed by the certification of medical professionals. They are the first baby steps in what can be a very long process. My application took four years before it was approved.

To get it, I represented myself in a court of law and essentially begged on my knees, pleading with detailed reasoning as to why my personal situation affects and at times strictly prohibits any version of what could be considered my working “ability,” let alone “normalcy.”

Not too long ago, I received a notice that a decision was to be made on whether or not I still live with a post-bacterial meningitis related traumatic brain injury that causes intractable and chronic mega-migraines, along with cluster headaches and nerve damage. I do, in case anybody was wondering.

But after two Social Security assigned medical reviews, it was declared that I am no longer disabled. News to me! The memo must have gotten lost because my body has yet to receive it.

Having worked since the age of 14, up until a few years ago, and only after pushing myself almost to the point of death, the disability checks I’ve been receiving consist of money I contributed to the taxpayer pot. I was grateful for it, knowing that many others have it worse in their own ways, even though the dollar amount is limited to covering a shelter over my forever hurting head.

The gift has been not to have to wrack my brain any further, figuring out where I can live. This has been a blessing, because I am then able to promote the full-time job that is self-care demanded by my ailments.

Constructing a non-mainstream path and not allowing challenges to completely dictate or entirely limit my overall quality of life does not lessen what I endure. Nor does it suggest having been cured or even improved.

It is generally understood that a governing “system” is in place to protect those of us who are not attempting to cheat or scheme to get disability. But let me tell you, our skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary and reproductive systems are continuously being violated and discriminated against by that very same “system.”  

The mourning of past lives and broken dreams is a permanent condition for me. The trauma of living and reliving what has transpired never ends. My symptoms are chronic and unpredictable, which inconveniences no one more so than it does me.

My body, my rights?  My ass.

Whether I can walk on the date of my upcoming appeal or have to crawl, I’ll fight however I can to make these points heard on behalf of everybody.           

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is also the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

Cities Sued to Make Sidewalks Accessible for Disabled People

By Maureen O’Hagan, Kaiser Health News

From her Baltimore dining room, Susan Goodlaxson can see her neighbor gardening across the street. But while other neighbors stop to chat, Goodlaxson just watches from the window. She uses a wheelchair, and there isn’t a single curb ramp on her block.

If the 66-year-old wanted to join, she’d have to jump her wheelchair down the 7½-inch curb and risk a fall. Ditto if she wanted to wheel over to the library, a trip that would require riding in the street to avoid rampless curbs and broken sidewalks.

“I don’t feel like it’s asking too much to be able to move your wheelchair around the city,” she said.

Federal law backs her up. Since 1990, the Americans With Disabilities Act has required governmental entities to provide people with disabilities access to programs and services enjoyed by their nondisabled peers. That includes sidewalks and curb ramps that make it possible to safely cross the street.

In Baltimore and many other communities across the U.S., there has been widespread noncompliance with this part of the law.

“An awful lot of [communities] have either disregarded their obligations under the ADA or made it the last priority,” noted Tom Stenson, a lawyer with Disability Rights Oregon, a nonprofit advocacy group. “There’s a culture throughout America of not taking the needs of people with disabilities seriously.”

SUSAN GOODLAXSON

In Baltimore, just 1.3% of curb ramps meet federal standards, according to the city’s own figures. In Oregon, about 9% of corners maintained by the state transportation department are compliant. San Jose, California, counted 27,621 corners with faulty or nonexistent curb ramps. Boston estimates fewer than half of its curb ramps are compliant.

Class-Action Lawsuits

In recent years, there’s been a flurry of class-action lawsuits, including one filed against Baltimore in June, with Goodlaxson among the plaintiffs.

Philadelphia was sued in 2019 over the condition of its sidewalks. Chicago was sued the same year for failure to install audible pedestrian signals, more than a decade after settling a suit over curb ramps.

In 2018, Atlanta was sued. A survey there determined that only 20% of sidewalks were in sufficient condition to be used by people in wheelchairs or motorized scooters and about 30% had curb ramps. Seattle settled a class-action suit in 2017. San Francisco and Long Beach, California, were sued in 2014 to make their sidewalks more accessible to wheelchairs.

The city of New York and its transit authority have faced repeated major ADA lawsuits, some alleging the same lack of access for people with disabilities that was supposed to be addressed in a lawsuit that was filed in the 1990s and later settled.

Los Angeles settled what is believed to be the largest of these suits in 2015. Its problems with sidewalks and curb ramps were so widespread that the city estimated it would cost $1.4 billion and take 30 years to get into compliance. In the years leading up to the suit, the city wasn’t allocating money for sidewalk repairs, for the ADA or otherwise, even while paying out millions in injury claims.

In all, hundreds of jurisdictions have faced lawsuits or entered settlement agreements after failing to meet ADA requirements for pedestrians and mass transit users.

The sheer number of noncompliant sidewalks, curb ramps, pedestrian signals and subway stations illustrates the challenges for people with disabilities.

It also leaves cities in a legal and financial squeeze, with the average curb ramp costing between $9,000 and$19,000. When the court requires a jurisdiction to build thousands of them to catch up, it can strain budgets.

Rosem Morton / for KHN

The ADA and the 1973 Rehabilitation Act resulted in significant changes that improved access and accommodations for people with disabilities. The ADA is clear that people with disabilities have the same right to pedestrian infrastructure as anyone else.

There are requirements covering a curb ramp’s width, slope and other specifications. Even a 1-inch lip can be too high for a wheelchair user to navigate. A slope that is a few degrees too steep can tip someone to the ground. Sidewalks that are crumbling, pothole-filled or otherwise obstructed — with utility poles, for example — force wheelchair users into the street for a dangerous ride.

No one expected the ADA to fix all these problems immediately. Under the law, new sidewalks must be built for accessibility. As for existing sidewalks, a federal appeals court in 1993 ruled that curb ramps must be installed or regraded when the road is altered — say, when it’s repaved.

Compliance Lags

Yet by 1999 it was clear many jurisdictions were ignoring the law. The U.S. Department of Justice began enforcement efforts, entering into settlement agreements with more than 200 non-compliant jurisdictions representing every state since 2000.

Still, compliance still lags.

Officials in Baltimore, New York and Los Angeles declined to comment for this article. Tony Snyder, manager of the Oregon Department of Transportation’s ADA program, said siloed funding sources, strict regulations and costs have been among the hurdles over the years.

“It wasn’t that ODOT doesn’t value accessibility,” he said. While fewer than 10% of the state’s ramps meet standards, he said, a lot of noncompliant ramps are nonetheless “usable.”

Kelly Lynch, deputy director and general counsel for the Montana League of Cities and Towns, an association that represents 127 municipal governments, agreed that costs can add up. She’s been working to help fellow Montanans —and, she hopes, officials in other jurisdictions across the country through the National League of Cities — find a path toward full accessibility, even if the steps are incremental.

Some changes, including educating road crews on the rules, are relatively simple. But a bigger problem is a widespread lack of spending on the nation’s infrastructure. “Our streets are falling apart, and so are our sidewalks,” Lynch said.

In August, the Senate defeated an amendment by Sen. Tammy Duckworth (D-Ill.) to a $1 trillion infrastructure bill that would have required state and local entities to describe how they would use federal dollars to improve accessibility for people with disabilities and for underserved communities. Sen. Pat Toomey (R-Pa.) called Duckworth’s amendment “politically correct virtue signaling” and argued that transit agencies don’t need that kind of federal oversight.

On top of the broader infrastructure issues, many officials don’t fully understand the ADA or its requirements, Lynch believes. And as the mother of a disabled son, she also said there’s another big factor at play: “People still discriminate against people with disabilities.”

As for Baltimore, Goodlaxson said she repeatedly called the city asking for curb cuts and sidewalk repairs. She remembers a crew coming to look at the sidewalks — and then nothing happening.

Advocacy organizations tried to negotiate with city officials, hoping to get Baltimore’s infrastructure brought into compliance on a timetable. When that didn’t work, they filed suit.

Most of these kinds of ADA cases begin similarly, with negotiations long before lawsuits. Some jurisdictions settled quickly and worked hard at improvements. Other cases go less smoothly. Oregon’s transportation department, which was also sued, is in danger of missing its construction deadlines under the settlement. Some repairs had to be redone because they still fell short of ADA requirements.

Sometimes cities try to get cases thrown out of court by pointing to the 1993 appeals court decision and arguing there’s no evidence the road has been altered since then, so ADA requirements haven’t kicked in. In New York, the transit authority argues in an ongoing lawsuit that while wheelchair users can’t ride, say, three-quarters of the city’s subways because there are no elevators, they can instead take the bus.

Some jurisdictions fight bitterly. Los Angeles spent five years in court before agreeing to settle. Linda Dardarian, one of the plaintiff’s attorneys, said cities don’t fully recognize sidewalk and curb ramp accessibility as a civil right. “They have viewed it as just another maintenance obligation, [like] grooming street trees.”

When the case was settled, the judge ordered Los Angeles to pay nearly $12 million to cover the other side’s legal fees and costs, on top of the estimated $1.4 billion it will cost to come into compliance.

Under these settlements, repairs often stretch a decade or more, and the city or town typically must pay for surveys, measurements and disability consultants to ensure compliance.

From the plaintiffs’ point of view, the challenge of these lawsuits is that there isn’t a huge hammer to hold governments accountable.

“If you don’t build the ramps, the penalty is you have to build the ramps,” said Stenson of Disability Rights Oregon, which provided legal representation to a plaintiff in the Oregon transportation department suit.

For those who can easily get around town, the issue can be invisible.

Goodlaxson didn’t see the problem until she began using a wheelchair five years ago, after surgery for a brain tumor. She remembers seeing people riding their wheelchairs in the street, thinking, “that doesn’t look safe. But I didn’t give it any more thought.”

Now, she realizes “people are terrified, but they can’t do it any other way.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

One in Four U.S. Adults Have Arthritis

By Pat Anson, PNN Editor

Nearly one in four American adults --- 58.5 million people – report having arthritis, according to a new study by the CDC that highlights both the aging of the U.S. population and the challenges that poses for the nation’s healthcare system.

Arthritis is a disease that causes joint pain and stiffness, which typically worsen with age, and is the leading cause of adult disability. The most common types of arthritis are osteoarthritis and rheumatoid arthritis.

Researchers found that over half of Americans aged 65 and older have arthritis (50.4%); along with adults who are disabled or unable to work (52.3%); and adults who rate their health as either fair or poor (51.2%).

The national prevalence of disability linked to arthritis – what the CDC calls arthritis-attributable activity limitations (AAAL) – has been steadily rising for nearly two decades. The trend appears to be accelerating due to aging, rising levels of obesity and reduced physical activity. The CDC estimates nearly 26 million Americans had AAAL in 2016-2018.

SOURCE: CDC

"AAAL prevalence continues to increase more rapidly than was projected. Because population aging and other contributing factors (e.g., obesity) are expected to sustain these trends, public health, medical, and senior and other service systems face substantial challenges in addressing the needs of adults with arthritis, who already account for nearly one quarter of U.S. adults," researchers reported in the CDC’s Morbidity and Mortality Weekly Report.

To address the social, physical and economic challenges of arthritis, the report recommends an expansion of outreach programs to individuals and groups at high risk of arthritis. AAAL is common among adult American Indian or Alaskan Natives (60.7%); low income adults (53.3%); adults living near or below poverty levels (63.3%); disabled adults (82.6%); and those with serious psychological distress (76.3%).

“Existing self-management education and physical activity public health interventions that are arthritis-appropriate and inclusive of adults with disabilities have proven benefits, including improved aerobic activity, confidence, and self-rated health and reduced depression, fatigue, and pain. These positive effects might be bolstered by combination with medical management, particularly for joint symptoms and mental health,” researchers said.

One step arthritis sufferers can take to help themselves is to make greater use of the Americans with Disabilities Act (ADA), which is underused by people with rheumatic conditions. The ADA can help eliminate physical barriers and improve access to transportation, building access, and workplace accommodations. If you feel you've been discriminated against because of a disability, you can file a complaint with the U.S. Justice Department under the ADA.

The Job Accommodation Network is another free resource that can be used for confidential job counseling, employment advice, facilitation of workplace accommodations, and the resolution of disability-related employment issues.

Being Judged for My Invisible Disability

By Victoria Reed, PNN Columnist

One of the things that irritate me is when people have complete disregard for disability parking spaces and park in them without a permit.

Recently, my family and I traveled to another state for a wedding. While we were there, we decided to check out a popular outdoor tourist attraction. Being that it was a weekend, the attraction was quite crowded. As we entered the parking lot, it was clear that we would either need to wait for a parking space or leave altogether. We decided to take our chances and wait.

Then I noticed a car parked in one of the disability spaces without the required permit. While the car had been ticketed by the National Park Service, I was a little annoyed because I have a disability placard (prescribed by a rheumatologist), and we could have parked in that space. Or someone else who is disabled could have.

My disability placard has been invaluable to me over the years, as I suffer from at least two of the “invisible” illnesses—rheumatoid arthritis and fibromyalgia. On days when my RA or fibromyalgia is at its worst, I utilize the placard and park in a space that would help minimize my walking distance. Sometimes both conditions work in-tandem to make my life miserable, causing joint pain and muscle pain/weakness.

I know I may not look disabled on some days. I try to put myself together before going out (no offense to those who are unable to), and I don’t use a wheelchair, scooter, cane or walker on a regular basis. I have used wheelchairs and electric scooters in the past while attending sprawling places like Universal Studios, zoos or other venues with my kids or where there would be significant walking involved.

Because I often don’t appear like a person who is disabled, I have received the “looks” from people when exiting my car after parking in a disabled parking space. I’ve also gotten nasty stares when I pull in and don’t hang my disability parking tag right away.

I wish that people would not be so judgmental, but sadly, some are! You never know what a person might be struggling with that’s not readily apparent. I always try to keep that in mind. If a person doesn’t use assistive devices, it doesn’t necessarily mean that they are not needed or mean that a person is completely well. 

Not only is the pain of RA and fibromyalgia a significant issue for me, so is the profound fatigue that accompanies both of these conditions. Some days, even if I’m not having active joint or muscle pain, the fatigue can be nearly incapacitating and make walking (or doing just about anything) difficult. In addition, the fatigue causes shortness of breath. People can’t usually see that.

Another thing that I’ve noticed in this Covid era is the decrease in disability parking spaces as retailers reassign those spaces for drive-up purchase pickup. I don’t have a problem with the drive-up spaces, as I often use them myself on more difficult days, but it’s a little concerning when disability parking spaces are reduced in favor of those. On better days, I like to park and go into stores because moving my body is good for me, regardless of the pain and/or fatigue I might be experiencing that day.

Hopefully, if Covid-19 ever completely goes away, retailers will add back those disability parking spaces that they took. We need those spaces!

It’s possible that someday I might need the regular use of a cane, walker or wheelchair, but until then, having an invisible illness and parking in a disability space will probably get more negative attention than it should. Yes, it bothers me when people judge me and assume that I don’t have a disability, but I will continue to keep my head up and go about my business.

As a chronic pain patient, I’ve learned to be tough, and I’ve had to develop a thick skin about be judged. Their problem is not my problem. However, my problem could someday become their problem! We are all just one accident, injury or illness away from possible disability. 

As for a parking space at that tourist attraction, we got one after about a 10 minute wait. I can’t complain too much about that!

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.

Covid Long-Haulers Face New Battle for Disability Benefits

By David Tuller, Kaiser Health News

Rickie Andersen took a brief break from work last March after she fell ill. Her cough, fever and chills were typical covid-19 symptoms, but coronavirus tests were so scarce she could not obtain one to confirm the diagnosis.

After Andersen returned to her job as an information systems project manager in the San Francisco Bay Area, she struggled with profound fatigue, cognitive difficulties and other disabling complaints. For six months, she tried to keep awake during meetings and finish basic tasks that took much longer than before.

Finally, she decided to retain legal help so she could take advantage of the disability insurance coverage offered as an employee benefit. “I realized this is not going to be a short-term thing,” Andersen said.

Hundreds of thousands of people around the world are experiencing what is being called “long covid” — a pattern of prolonged symptoms following an acute bout of the disease. Many have managed to continue working through accommodations like telecommuting, cutting down on hours and delegating responsibilities.

Others have found it impossible to fulfill their professional obligations and are making the tough decision to stop working and seek disability benefits. But as they pursue the application process, they are discovering a particular set of challenges.

Given the lack of testing in the first months, many “long haulers,” like Andersen, have no laboratory proof of infection. While antibody tests can provide such evidence, their accuracy varies. Moreover, many of the reported symptoms, including fatigue and cognitive impairment, are subjective and not clearly linked to specific organ damage.

Beyond that, compiling a thorough record for a disability application and navigating the bureaucratic hurdles require sustained brain power, something many long-haul patients can no longer muster.

Barbara Comerford, a New Jersey disability lawyer, said she received dozens of inquiries starting last fall from long haulers seeking advice on filing for disability and often citing what is being called “brain fog” as their main complaint.

“Most are people calling to say, ‘I thought I could do it. I can’t. My mind doesn’t function for more than really brief periods of time,’” Comerford said.

In the U.S., close to 30 million people have tested positive for the coronavirus, although many cases of infection are asymptomatic. What proportion might be affected by long-term illness isn’t known. Scientific understanding of the phenomenon is in its infancy.

In January, The Lancet reported that around three-quarters of more than 1,700 covid patients who had been hospitalized in Wuhan, China, reported at least one ongoing symptom six months later. More recently, investigators from the University of Washington reported in JAMA Network Open that around 30% of 177 patients who had tested positive for the coronavirus still reported symptoms when they were surveyed one to 10 months later.

Strict Criteria for Benefits

The Social Security Administration provides long-term disability to American workers who qualify under its strict criteria, but applicants often get turned down on the first try. A few states, including California and New York, provide short-term disability benefits, in some cases for up to a year.

Tens of millions of Americans also have private disability coverage, most often as part of their employment benefit packages.

The maximum currently available to an individual through the Social Security Disability Insurance program is just over $3,000 a month. A typical private long-term disability plan might cover 60% of a beneficiary’s base salary, with a much higher maximum amount.

Sandy Lewis, a pharmaceutical industry researcher, fell ill last March with what she assumed was covid. She recovered but relapsed in April and again in May.

Through her employer-based insurance coverage, she received short-term disability for November and December, but the insurer, Prudential Financial, rejected her request for an extension. Soon after, she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a debilitating illness that can be triggered by viral infections.

Lewis, who lives outside Philadelphia, is planning to appeal Prudential’s rejection of the short-term extension and apply for long-term disability. But the matter is unlikely to be resolved before fall. The situation has left her feeling “devastated,” she said, and in serious financial distress.

“This has been such an arduous journey,” she said. “I have no income and I’m sick, and I’m continuing to need medical care. I am now in a position, at 49 years old, that I may have to sell my home during a pandemic and move in with family to stay afloat.”

In Lewis’ case, a Prudential reviewer noted that her symptoms were “subjective” and that there were “no physical exam findings to correlate with any ongoing functional limitations,” according to Cassie Springer Ayeni, an Oakland disability lawyer who is representing her as well as Andersen.

Prudential would not comment on a specific case. Evan Scarponi, chief claims officer, said in a statement that “our collective understanding of covid-19 and any associated long-term effects are still evolving” but that Prudential is “well-versed in evaluating both subjective and objective aspects of disability claims.”

Lawyers and advocates in the field expect the numbers of covid-related long-term disability applicants to rise this year. But it’s still too soon to detect any such increase, said a spokesperson for the American Council of Life Insurers, a trade association. Workers typically must be unable to work for half a year before becoming eligible for long-term disability benefits, and applying can itself be a lengthy process.

‘No Objective Evidence’

Brian Vastag, a former Washington Post science and health reporter with ME/CFS, stopped working in 2014 and then sued Prudential after it rejected his long-term disability claim. Insurance companies, he said, can easily find reasons to dismiss applications from claimants with chronic illnesses characterized by symptoms like fatigue and cognitive impairment.

“The insurance companies will often say, ‘There’s no objective evidence, so we have nothing to support your claim,’” said Vastag, who won his case against Prudential in 2018. “I’m worried about the long-covid patients who can’t work anymore.”

Claimants can appeal a rejection. If the insurer rejects the appeal, claimants have the right to sue, as Vastag did. However, most such cases fall under the Employee Retirement Income Security Act of 1974. Because this federal law requires a losing insurer to pay the unpaid claims but does not provide for punitive or compensatory damages, critics argue it incentivizes the denial of coverage.

In the event of litigation, the court’s role is to assess the already existing evidentiary record. That means it is essential to present a robust case in the initial application or during the administrative appeal before any litigation begins, said Ayeni, the disability lawyer for Andersen and Lewis.

“It’s the only shot to build a record for the courts, to develop a full body of evidence,” she said.

However, a successful disability case ultimately depends on documenting inability to work, not on obtaining a specific diagnosis. To augment the medical evidence, Ayeni often sends clients for neuropsychological testing, investigations of lung function and other specialist assessments. She also gathers affidavits from family members, professional colleagues and friends to confirm patients’ accounts.

In Rickie Andersen’s case, the strategy worked. Recognizing how complicated the application process was likely to be, she sought legal help early on. The insurer contracted by her employer approved her for short-term benefits late last year and granted her application for long-term benefits in February.

“I knew all of it was completely exhausting, so it wasn’t something I thought I could do on my own,” Andersen said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

How to Win Your Disability Case

By Mia Maysack, PNN Columnist

A dear friend and I have ventured through the Social Security disability process. We’re both severely impacted by chronic head pain caused by traumatic brain injuries. Her pain stems from a motorcycle accident, while mine is a souvenir from bacterial meningitis. 

Our paths crossed while attending a lobbying event. We bonded instantly -- not only because we could relate to each other’s pain -- but because we pushed ourselves far past our limits. Accepting reality is tough on us both.   

Neither of us are fluent in the practice of law, although my friend worked as a paralegal prior to her health deteriorating. Together, we’ve cultivated a few main points to be used as a guide for others who may be considering their own pursuit of disability. 

First, take a moment to realize it requires much patience and time. For us there were moments of frustration and disheartenment. It’s highly probable that Social Security will deny your first claim and that you’ll need to appeal. This is how it goes for almost everyone. 

On average, a 2 to 3-year window can be expected from the time of filing your first claim until you are potentially approved. Each person’s case is different. It took four years before my application was approved.  

During the interim there’s still a need for money to survive and there are no guarantees that you’ll win.

It is your right to obtain legal help and many lawyers state they are not entitled to compensation unless benefits are granted. You do not necessarily need an attorney or representative, but doing so could speed up the process. Many of us have difficulty functioning, let alone keeping our thoughts straight, so appointing others such as a trusted friend or loved one is another possibility.   

It all boils down to what can be proven, so the most effective way to go about proving your claim is through documentation.  It is important to keep your medical records organized. Personal journals and diaries are also options, and compiling them could aid in coming to terms with whatever your situation is — an opportunity for accepting a “new normal.”       

Ultimately, the judge will want to see continuous visits with healthcare providers, focusing on the conditions that limit or prevent your daily activities and work. The invisibility of chronic pain is very difficult for some people to comprehend, so you will need proof.  

It is possible that a health care professional may not wish to complete the paperwork on their end because it only adds to their overflowing caseload. It’ll be your decision to continue hounding them for what you need or perhaps seek out a more empathetic provider and start over from scratch.   

What If I Win?

If you are granted disability benefits, it is imperative to take a few things into consideration.

First, celebrate the victory. And then be prepared for more work. Be sure to apply for secondary Medicare insurance within the allotted time frame in order to optimize the healthcare resources available to you.

A certain amount of income is permitted while receiving disability. Any sense of financial independence is encouraged, but returning even to part-time employment poses the risk of your case being questioned after your income caps out at a certain dollar amount. The assumption may be drawn that you are not only fine enough to return to work, but also that you're no longer in need of supplementary income.  

Reviews occur on a regular basis, demanding consistent proof that your situation is still as severe as it was. The Trump administration has proposed new rules that would increase the frequency of disability reviews, which some critics say could result in thousands of Americans losing their disability benefits.

Be sure to continue seeing your providers, taking your medications and doing what is expected of you. Noncompliance and missed appointments could lead to a denial of your claim, which is far from ideal due to the difficult reinstatement processes.  Keep track of relevant documents and maintain personal records of your own to present upon request.

The moment my disability paperwork went through, the insurance I obtained through the state immediately ended. Several months passed before coverage was reinstated. Thankfully, that was okay for me not be covered for a while, but for many others that could be detrimental.

Getting disability can be a daunting experience, but a wise person told me that I’d learn a lot going through the process. My friend and I prevailed. Hopefully, you will too.

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

Winning My Disability Case

By Mia Maysack, PNN Columnist

Never had I ever sent a thank you note to a judicial official. Not until I learned, after a four-year long process, that my disability case has been approved.  

So I write this teary-eyed, realizing I can now look into getting an oxygen tank for my cluster headaches, as the ability to obtain one through regular insurance was denied multiple times. I can also implement regular massages into my pain management plan, which might sound luxurious but for me is more a matter of physical functionality.

This decision will give me bits and pieces of my life back. The money will be extraordinarily helpful, a lifesaver really.   

I have chosen to no longer feel anything negative about deciding to pursue my case. Perhaps I don't deserve it as much as the next person or maybe I am too young or able bodied at times to even have filed. 

I pursued my claim only as a last resort, holding onto my identity as a worker and employee for dear life — and for far longer than what was in my best interest.

There's no question that part of what heightened my ailments is the fact that I pushed myself too far for a very long time. But having already been so used to daily head pain, I kept my head up by remaining busy and distracted on other things. That’s how I survived.

I also attempted countless career paths to accommodate my illnesses, including but not limited to working part-time, shortening shifts, changing job titles and even accepting positions I was overqualified for because being a part of the workforce has always been a value of mine.  

I've been fired, had hours cut to the point of being forced to quit, experienced pain induced panic attacks and frequently needed to leave work -- unfortunately not with fair warning or adequate notice to my employer. This resulted in judgement and discrimination, despite never being offered accommodations. Nor were there efforts to follow the detailed instructions of my care team by anyone other than me.

So it made the most sense to represent myself at my disability hearing,  as I am my own best expert.  

Applying for disability is extremely strenuous, tiresome and at times very frustrating. Between jumping through the insurance hoops as they try their best to justify not covering what is needed, maintaining numerous appointments, and balancing all the paperwork on top of being chronically ill and in pain. It is no exaggeration to say the disability process is a full-time job.   

Then there's the potential for added hurt when met with the assumption you could just be lazy, exaggerating or are perhaps flat out lying, because it's undeniable that the system has indeed been used and abused. 

To finally have been granted an opportunity for a face-to-face in-person hearing was a gift. It provided the opportunity for me to make my case real. I felt empowered to fully exercise my rights.

I’m also thankful to have crossed paths with someone who I considered to be a fair judge. They corresponded with a vocational expert, treated me with respect (even after I turned down the final chance to have a lawyer represent me), and took all evidence into thoughtful consideration, including the neurology report and testimony of a witness who accompanied me.  

I share this to serve as an illustration of what it's like to travel down this road. It took a lot of detours and led to quite a few dead ends, but to put a face on the “invisibility” that millions of us live with and have it validated is another small step forward.   

Upon being dismissed, the clerk congratulated me and said something that will stick with me forever: "It's not that you weren't doing or wouldn't continue to do well in past endeavors but your calling is higher."

We can find meaning to our lives despite all the rerouting. Sometimes we're even able to build an entirely new path.

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

When I Call Myself Disabled

By Barby Ingle, PNN Columnist

Recently an interesting hashtag started trending on Twitter: #WhenICallMyselfDisabled.

Cassie, a friend who also has chronic pain, sent me a message to make sure that I had seen it. I am so glad she did because it sparked something in me that I didn’t even know I had an opinion about.

There are so many people in the chronic pain community and we all have different disabilities, diseases, genetics, treatments, healthcare, etc. Even people with the same diseases and conditions can have different levels of disability.

There are many legal and governmental definitions of disability. For example, to qualify for Social Security disability, a person must have a physical or mental impairment that has lasted or is expected to last at least 12 months and which prevents them from doing a "substantial” amount of work.  

The American with Disabilities Act broadly defines disability as a physical or mental condition that substantially limits one or more major life activity.

Often healthy people have a tough time understanding what we live with or the challenges we face on a daily basis. That’s where #WhenICallMyselfDisabled comes in. It can help us explain our own personal definitions of disability and how being disabled impacts our lives.  

The first time I pulled up the hashtag on Twittter, I didn’t plan on sharing it. I was just reading through various tweets when my personal lightbulb went off. When did I start considering myself disabled? How do I define it?

Here’s how I responded on Twitter:

#WhenICallMyselfDisabled its because I do not know when I will be able 2 physically attend an event or have to leave early due to lights, noise, fatigue, having a seizure, a pain flare that no 1 can see but levels me, having an asthma attack from walking or smoke... I could go on pic.twitter.com/aEzxgKJZKH

— Barby Ingle 📣 (@BarbyIngle) July 5, 2019

Here's how some people responded to my Tweet:

 It's a life of pure hell isn't it? This is called living???😟😟😥

Oh, I can so relate hun. 💟

Me three. I’m tired & in constant pain. Don’t make me wait in lines, stand at counters, walk stairs, etc. It’s not cuz I’m lazy I gd walked 4,000 miles once! But of course, everyone assumes it’s cuz I’m unmotivated & they hope that pushing my limits is tough love lesson I need.  

I later went to Facebook and shared a longer version of my Twitter message:

#WhenICallMyselfDisabled it’s because I do not know when I will be able to physically attend an event or have to leave early due to lights, noise, fatigue, having a seizure, a pain flare that no 1 can see but levels me, migraine, having an asthma attack from walking or smoke... I could go on, when was the last time I slept, when is the last time I vomited from the pain, is my hand working or is the dystonia attacking today. I could go on and on!

I call myself disabled because I can’t sing, dance and cheer the way I used to. I could go on and on... Despite being disabled, I do my best to be my best and be the best me I can be. Being disabled just means it takes me longer, I have to find another way to accomplish things in life, I still have value and worth.

I didn’t know if my Facebook message would resonate or not.  I just had a feeling how powerful this hashtag could be in helping others understand we may look normal and fully functioning, but don’t take our looks for granted. Here are a few tweets I saw after my post on Facebook.

#WhenICallMyselfDisabled I am acknowledging that my body is different but normal.

#WhenICallMyselfDisabled I feel like I finally really understand my body and mind and can accept them as they are. I have so much more confidence moving through the world, and acceptance (from myself) that the accommodations I need aren't laziness or selfishness.  

My Facebook message received more than 80 likes, comments and shares, so I know it resonated with my pain friends and “non-disabled” friends. It was an outpouring of support and helped lift stigmas that society often puts on people who need some extra help, assistance or time.  

Knowing that no matter what disability I have that I still have value and worth makes me feel so much better. I’m glad the hashtag trended. It could have been a pity hashtag, but I found it to be socially educational and meaningful. I am glad so many others joined in before and after me. A message like this can go a long way to change how we are viewed.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Invisible Illness and Disability

By Mia Maysack, PNN Columnist

A final once over in the mirror. I straighten my navy-blue blazer and fastened the top button on the very first dress shirt I've ever owned, reflecting upon how grueling the process has been.

Pursuing a disability case was an absolute last option for me.  Being a contributing part of the workforce is something I not only enjoyed very much, but it made up part of my identity.

There were moments I was unsure if I'd even make it to this point, but I'm grateful to have an opportunity to exercise the right to represent myself at my disability hearing without a lawyer.

When sharing this viewpoint with others, I've mostly been advised against it but the route of legal assistance proved a dead end for me (see “Taking Control of My Disability Case”). Other recommendations included: Do not smile or dress nice, don't show much personality at all, or mention hobbies like volunteering because it could be considered contradictory to my claims.

Being differently enabled does not make me any less of a person so I refuse to act as such. It’s frustrating to feel as though you've got to convince others of your truth and, as hard as you try, they still may not “get it.”

I'm aware that my illnesses aren't visible to outsiders and because of that they are questioned. I showed up to provide an authentic glimpse as to what invisible illness can look like and how it has impacted my life.

I live in a constant state of post-infection intractable chronic migraine -- head pain that has never gone away since the year 2000. This pain is expected to be life-long and incurable.

There are also daily cluster headache attacks, which are an entirely different beast. The cherry on top comes in the form of my nerves being hyperactive, resulting in a diagnosis of fibromyalgia.

These conditions fluctuate. One day looks different than the next, but even at my absolute best there is still pain. Things can turn for the worse at any moment without warning and constant breaks are required for even simple tasks. I am not able to function optimally in a gainful work place environment, despite my countless attempts at trying.  

Between the nausea/vomiting, light sensitivity/vision disturbances, persistent fatigue, brain fogginess and the on-going discomfort, there hasn't been a single aspect of my life that has not been negatively impacted: relationships, activities of daily living, employment, higher education,  goals, dreams, aspirations....

I prolonged beginning the disability process due to the fact that I'm aware so many have it worse than me. I am thankful for my senses, mobility, the fact I can use the restroom on my own and feed myself, although there are periods daily when I can be entirely incapacitated.

Over the years, 34 prescriptions have been written for me -- all worsening matters as a result of the side effects. About 1,800 injections have been administered.

I now take full responsibility for my own wellness and have completely revamped my lifestyle to accommodate my conditions. I’ve also found a new passion for patient advocacy as a way to find a purpose in all of the agony, leading to the reality that I am my own best expert. It's empowering to be armed with knowledge on behalf of the millions who live with headache and migraine disorders.

While conveying this information at my hearing, I experienced more emotion than anticipated, especially when a friend took the stand to provide testimony as a witness. She reminisced on how we used to go dancing together and described how we could be so carefree. But over the years what seemed to have started as a slight hindrance turned into an everyday occurrence, rippling into less and less quality time spent. This took a toll on us both.  

I can only hope it came across that migraine matters, that it burdens us all, and everyone should care about disabilities because it only takes a slight change in circumstance to alter your life forever. I didn't choose to struggle every day with getting out of bed, to have much of my time flat out stolen, or to have many memories tainted by the relentlessness of my chronic pain.  

While awaiting word back on a decision, I cannot help but wonder. How many more times will they want to see and hear from me? I've already come thus far and I'm not giving up! 

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Civil Rights Case Gives Hope to Pain Patients

By Richard Dobson, MD, Guest Columnist

People with chronic disabling pain frequently complain that doctors discharge them from their practice because of the medications they take. Sometimes doctors refuse to accept patients who are taking opioid pain medications, even though the medications treat a legitimate medical condition.

There may be hope that such actions will be considered violations of the civil rights of patients.

This week the Civil Rights Division of the Department of Justice (DOJ) signed a formal agreement with Selma Medical Associates, a large primary care practice in Virginia, that may open the door for people with chronic pain to regain their full access to medical care.

Selma Medical refused to schedule a new patient appointment for a man who was taking the addiction treatment drug Suboxone. He filed a civil rights complaint asserting that his rights were violated because has a disability.

According to the complaint, Selma Medical “regularly turns away prospective new patients who are treated with narcotic controlled substances such as Suboxone.”

The DOJ and Selma Medical settled the complaint out-of-court. The full agreement can be read here.

In essence, Selma Medical agreed to stop discriminating on the basis of disability, including opioid use disorder (OUD). The settlement identifies several specific ways that Selma Medical was violating the civil rights of people with disabilities.

“By refusing to accept the Complainant for a new family practice appointment solely because he takes Suboxone, Selma Medical discriminated against him by denying him the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of Selma Medical.

By turning away the Complainant and other prospective patients who are treated with narcotic controlled substances, including Suboxone, Selma Medical imposed eligibility criteria that screen out or tend to screen out individuals with OUD.

Further, Selma Medical failed to make reasonable modifications to policies, practices, or procedures, when such modifications are necessary to afford such goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities.”

In the agreement, Selma Medical agreed to stop discriminating now and in the future. The staff and administration are also required to undergo intensive training on the implementation of the Americans With Disabilities Act (ADA).

Importantly for pain patients, the agreement applies to people taking “narcotic medications” for any reason and is not limited to people who are taking Suboxone for OUD. The agreement does seem to imply that people taking opioid medications also have their civil rights violated if they are refused medical care on the basis of their diagnosis and their use of opioids.

A former staff attorney in the DOJ’s Civil Rights Division agrees.  

“This formal settlement agreement from DOJ affirms that discrimination in access to medical treatment based solely on an individual’s use of a particular medication — in this case, a narcotic controlled substance — may violate the law,” says Kate Nicholson, a pain patient and civil rights attorney who helped draft federal regulations under the ADA.

Anyone who has chronic pain and who is discharged from a practice or refused admission to a medical practice should let the medical staff know that this is a violation of the ADA. Show them the agreement between Selma Medical and the DOJ. Then if the medical practice still refuses care, file a formal complaint with the Office of Civil Rights. Instructions on filing can be found here.

As part of the settlement agreement, Selma Medical had to pay $30,000 to the complainant for “the discrimination and the harm he has endured, including, but not limited to, emotional distress and pain and suffering.” Selma Medical also had to pay a civil penalty of $10,000.

It seems to me that the substance of this agreement gives real hope to the chronic pain community that discrimination based on disability, even if the disability is based on pain, is illegal and violates their civil rights.

Richard Dobson, MD, worked as a physician in the Rochester, New York area for over 30 years, treating and rehabilitating people suffering from chronic pain, mostly as the result of work or motor vehicle accidents.  He is now retired.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Taking Control of My Disability Case

By Mia Maysack, PNN Columnist

This stack of papers may not look like much, but it is my medically documented life beginning in the year 2002.

I personally highlighted them, so I can confidently report that the words “headache” and “migraine” are mentioned hundreds of times throughout.

I've been in the process of pursuing Social Security disability for about three years, which is not uncommon. Many have abused the system and there's also a high volume of claims being submitted and reviewed every day.

It took me a long time to even get to the point of filing for disability.

What does filing say about me as a person? Will I be judged? They probably won't even believe it. There are so many out there that need and deserve this more than me.

I still have those thoughts from time-to-time, even though my chronic migraines and cluster headaches have impacted every aspect of my life in a negative way – including employment.

I do not take the collection of denial letters I have received personally, as they've got to do what they can to weed out whoever isn't entirely legitimate. I know that I am, so I'll keep fighting.   

In recent months, another denial letter came. They acknowledged I am unwell but still deem me “well enough.” I decide to appeal immediately, as they only give you 60 days to do so. I also hired legal representation to help me through the process.

When I called them to check on the progress of my case, their tone felt dismissive. I would get put on hold before finishing a sentence or receive roundabout answers to basic questions. I’d also be reminded -- as if I wasn't already aware -- that disability court dates are scheduling 23 months from now.

I don't mind waiting, considering the fact I have no choice.  But it seemed as though I was being slow walked on a hamster wheel and not moving forward at all. This week I chose to contact Social Security directly and they informed me that, according to their records, there is no appeal on file for me at this time.

What does this mean, exactly?  In short, my legal representatives have not been covering their responsibilities to me as their client. I've been scraping by with 26 cents to my name while relying on their word, which I've now been convinced means next to nothing. 

I asked a Social Security representative what my next steps should be to take control and clean up this mess. He instructed me to visit their website and file an online appeal, which has since been done. Since I can’t account for where exactly all the paperwork I've been sending to my "help" has been going, I plan to stop in my local Social Security office to hand my stack of medical records directly to them.

We are our own best advocates, but how do I advocate for myself?  This is one way. I am the one who knows and understands the extent of how this debilitation has derailed just about every goal or dream I've set my sights on. But I won’t let that define me. I am more than my illness and won't allow my case to be dismissed.

I'm aware that representing myself may very well set this process back even further, but I've come to the realization that if we want something done right, we've got to make it happen ourselves.

At first, I felt disheartened because this seems like a full-time job in itself. But when others do not hold up their end, I now see this as an opportunity to raise awareness, address policy, educate and ultimately claim ownership of my own life. Now and in the future.

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.