By Mikki Ingram, Guest Columnist

When I was a little girl growing up in Oklahoma, I was a tomboy. I played outside constantly no matter the season and was excited to be so close to nature. I did this in spite of frequent sprains, joint dislocations and abnormally bad “growing pains” starting at age three.

To me, those things were normal. I never thought to ask anyone about their own experiences, because my parents never made any fuss. Why should I?

As I grew up, the growing pains never stopped. I remember multiple times, as I was in the throes of puberty and even after, waking up in the middle of the night, crying and rubbing my joints. I had menstrual cramps so bad that I had to miss school. No Tylenol or ibuprofen combination would touch those pains. My dad thought I was being overly sensitive.

After my daughter was born in 2003, I became extremely ill. The growing pains that I had come to regard as normal were more extreme than ever. Fatigue also swept over me. I missed the first 6 months of my daughter’s life because I was asleep for most of it.

The pain was consistent, the fatigue more so, and every doctor I went to said the same thing: “You look fine. You’re too young for this.”

I was diagnosed that year with fibromyalgia by a rheumatologist who called it a “diagnosis of convenience.” I was also advised to lose weight, eat better food and that the pain was all in my head. My primary care provider even said I should put my child up for adoption.

After months of plying me with random medications, none of which worked for this pain, I went to a hospital emergency room. The nurse that I saw is a woman I’ll never forget.

She ran an ultrasound on my gallbladder and came back saying, “You have gallstones. There are four of them and one of them is almost one and a half inches wide. You need your gallbladder out. Take these slides to your doctor and get a surgery scheduled.”

I was grateful beyond measure to her. My doctor, however, wasn’t. He didn’t see the need for urgency, so he scheduled my surgery for several months later. Meanwhile, the pain refused to stop. My fat-free diet did nothing and I was in trouble. In the ER of that same hospital, they told me that if I didn’t have the gall bladder out within two days, I’d be dead.

I filed a complaint about the doctor later. Nothing was done and he continued to practice until retirement.

That same provider sent me to a spine doctor. They were trying to figure out if the pain was coming from my back. The doctor said I needed to exercise more and do yoga, and insisted I get corticosteroid injections into my spine. I dutifully obliged the doc, getting multiple injections with no positive result. They only made the pain worse, so much so that we had to beg the doctor to stop scheduling me for them.

In 2018, at the age of 35, I was finally diagnosed with hypermobile-type Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that explained my lifetime of sprains, dislocations and growing pains. I also found out that those “miracle” epidural and corticosteroid injections had further damaged my connective tissues.

That damage occurred when, prior to my EDS diagnosis, I had been given both ciprofloxacin and levaquin antibiotics to treat my chronic sinus infections. Both of those medications weakened my body’s tendons and, four years later, still give me pain. The warning labels on those antibiotics specifically say they are not for people with connective tissue disorders like EDS.

People have looked at me throughout my life and accused me of everything from faking, to lying,to being a hypochondriac. I’ve been told that it’s my weight, accused of taking methamphetamine (due to my near-scurvy levels of vitamin D and having to have all of my teeth removed) and much more, all while being told, in spite of the evidence on my chart, that I am “fine” because I somehow look fine.

When I look at me, I don’t see “fine.” I see a woman who barely sleeps because of excess adrenaline due to EDS. I see a woman who has nearly died due to medical negligence. I see a woman who has permanent nerve damage due to that same negligence. I see a woman who was used by many providers as a guinea pig for their pet projects to prove that I really was “fine.”

I see a woman who now suffers from severe post-traumatic stress syndrome, as well as Impostor syndrome, due to all the times she was called a liar in spite of mountains of evidence to the contrary. I see a woman who survived in spite of it all.

Most of all, I see a woman who fights to be treated like a person with a chronic condition, multiple comorbidities and intractable pain, instead of a person who is actually “fine.” But, maybe that’s just me. 

Mikki Ingram lives in New Mexico. Mikki is a proud supporter of the Ehlers- Danlos Society.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.