Why You Shouldn’t Be Afraid to Ask for Help

By Barby Ingle, PNN Columnist

We all have lives to lead and sometimes we must focus on ourselves before we can help others. There's nothing wrong with that.

But what if your health (or lack thereof) prevents you from accomplishing something good for yourself and others? What can we do to become more independent and productive while living with a chronic pain condition or disease? 

Here are three things to consider:

1. Social isolation is not healthy

2. Independence can be healthy

3. It's okay to ask for help  

One of the people in my life is the most independent person I know. “Em” only asks for help when she needs it, but often fails to recognize when the need arises. If Em asked for help more often, things might have gone differently in her life and been much easier.

I've been thinking about this recently. I've been balancing my need for independence as a person in pain with my desire to be more open with people. We all want to feel more independent from our caregivers, family and friends. But we also want to stay connected. Seeing some of the challenges in Em’s life reminds me to ask for help more often.

In my books and columns, I have freely shared my life experiences, tips, tools and resources to help others. That helps me feel open and transparent, but it's usually about things I have been through and already found solutions for. When faced with a new challenge, I recognize that I isolate more than I should.

Like my friend Em, I need to find more ways to connect and ask for help when needed. We all need support from others, even if it's just someone listening or offering advice on handling a situation.

When I’ve asked for help, it didn't always go how I envisioned. I may have asked the wrong person for support or had expectations I put on that person that they could not live up to. I had to learn to be okay with the service they offered, rather than be upset and sad when they could not provide what I expected.

The more I learned about their strengths and what they could do, the better I felt asking for their assistance. Asking for help shows that I trust them enough to let them into my world. When you ask for help, you are not weak. You are human.

Asking is not always easy. You have to stop pretending that you can handle everything yourself and that everything is fine. You need to accept the support of your friends and family without feeling like you’re burdening them or making them feel bad about themselves. Asking shows them how much they mean to you.

Here is an excellent example of a recent conversation I had with Em about a friend who wanted to be more social and live life more fully. Em recognized her own limitations. 

"She asked me to meet with her more regularly. Saying she needs people in her life at this difficult time. I am unable to 'be there' for people. I am okay with hanging out occasionally, but I barely have the energy to do basic things each day," Em told me.

My response to Em was this:

"I get it. Explain that you are a chronically ill patient and enjoy connecting when you are up to it, but physically hanging out or texting, talking and engaging cognitively takes a toll on your energy and health. You understand her desire to remain social and the life challenges it takes to follow through. You do best by text, when you have the flexibility and health to answer. You understand her need to be flexible too. She will be in your prayers. Tell her not to be upset if you have to turn down an invite. It doesn't mean you don't want to connect, just that you will participate when you can." 

We must learn how to manage our emotions better so that they don't rule our lives. That means taking a step back so that we don't make decisions while in the middle of a panic attack or depressive episode. And sometimes we just need to hear the answer and decide what to do with it.

Asking for help is complex and we won’t always get what we want. At the same time, we have to step out of our discomfort to make social connections, take down our protective walls, and connect with humanity. Being your best advocate, having others in your life, and maintaining boundaries will help you live life to the fullest. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

Hearts Go Out to Our Personal Caregivers

By Barby Ingle, PNN Columnist

With Valentine’s Day coming up and February being Heart Month, I thought it would be fitting to say thank you to my caregiver and husband, Ken Taylor.

Ken has been working overtime this past year, and especially in the last few months as I have been ill with Valley Fever. He is one of those caregivers who dedicate their lives to helping pain patients, making our lives better just because he cares.

Like many caregivers, Ken is not paid for assisting me or the many others he has helped over the years. He does it out of love, respect and dedication.

Caregivers have a large responsibility once they take on the role. Ken has helped me with personal care, such as bathing, grooming, dressing me, and helping with laundry or other cleaning duties that were once things I loved doing.

Not being able-bodied has really put a lot of pressure on Ken, but he makes sure I am taken care of every day.

Luckily for me, he is also great at cooking. I am the worst cook I know and was that way even before I developed disabilities from chronic pain and other rare conditions.

Ken loves to cook and does most of the meal prep, shopping and other housekeeping duties. He does it with a smile most of the time.

KEN TAYLOR AND BARBY INGLE

Some other responsibilities Ken has taken on include help with packing for a trip, making sure my wheelchair was charged up, providing transportation and being a great emotional support for me. Many times over the years he was the one who made sure I was put together and looked “camera ready” when we had a TV crew filming or doing interviews as part of our advocacy for the pain community.  

Ken gets love, credit and thanks from me often, but I sometimes feel that his work – like most caregivers -- is not as appreciated by society. People don’t realize how much our caregivers help us.

Here is a short list of 10 things that caregivers do: 

1. Assist with personal care such as bathing, grooming, dressing, toileting, exercise, meal preparation, shopping, housekeeping, laundry and other personal errands

2. Care for the elderly such as orienting someone with Alzheimer’s disease or dementia

3. Communicating with healthcare providers as an objective advocate and relaying information from providers to other family members

4. Providing support as a stable companion and confidant in all matters personal, health-related and emotional

5. General healthcare such as overseeing medication use, appointment reminders and help with exercise

6. Home organization and cleaning

7. Mobility assistance such as help with getting in and out of a wheelchair, car or shower

8. Monitoring a care plan and noticing any changes in the individual’s health and reporting them to healthcare providers

9. Providing companionship and general supervision

10. Transportation such as driving to and from activities or running errands

Our caregivers also help us navigate and negotiate our way through the complex healthcare and education system. They are our voice when we’re not up to the challenge of a given situation.  

Accepting help from a caretaker doesn’t mean giving up your independence. By accepting help when needed, you can build on your ability to help yourself and spend your energy on enjoyable activities that would be missed otherwise. Caretakers provide guidance, family empowerment and appropriate help. That is why it is important to include them in your care decisions and in setting expectations.  

One goal I have as a pain patient is to increase my daily activities as much as I can. Sometimes for me this includes the use of a wheelchair and other assistive devices. I look at them as a way to get more activities done independently. For years I was unable to walk long distances, so I got a scooter and was able to ride two blocks over to our mailbox to pick up the mail. Once I got my scooter, it gave me more freedom and I was able to accomplish more, relieving some of the duties Ken was doing.  

Thank you with all my heart for my caregiver! May he always choose to help me when he can, take breaks when he needs them, and may we support each other in all our days. Thank you to Ken and all caregivers who are making our lives more manageable.   

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. 

A Pained Life: Accepting Help is Not a Weakness

By Carol Levy, Columnist

A few days ago I was walking with my friend, Jean. She had her cane in one hand and a wheeled bag in the other. As we approached the stairs going down to the walkway I asked, "Can I take the bag?"

"Oh, no. I'm fine," Jean said.

No, she wasn't. It was an additional burden to manage the bag, as well as the cane. How silly of her, I thought. It would be so much simpler if she'd let me help her.

It did not immediately occur to me that I had done the exact same thing only a few days earlier, when someone offered to help me.

I have neck and back problems. As a result, I should not be lifting anything heavy, which definitely includes the two 42-pound bags of cat litter I had bought.

I put on my neck brace. Grunting and groaning under my breath in case, heaven forbid, someone should come by and acknowledge my struggle, I pulled the bags out of the car.

Then I took the wheeled little platform I have for moving something heavy or unwieldy, put one bag on it, got on my knees and pushed it to the door. I went back to the car, got out the second bag and repeated my performance. Next I lifted them to get them up and over the door jam. Breathing heavily and already in pain, I readied myself to start rolling them end-over-end, like a Slinky, but going up stairs instead of down, to my third floor apartment.

I rarely see my neighbors but suddenly, out of nowhere, a man appeared. Without a word he picked up one of the bags and hefted it up onto his shoulder.

"Oh no," I said. "That's okay. I'm fine. I can get it upstairs. Thanks anyway."

Luck and kindness were with me, since logic and intelligence were not. He just looked at me and continued to carry it up the stairs to my front door. He then got the other bag and carried that up to my door.

After lifting or carrying something heavy, which sometimes can be merely five pounds or so, I am exhausted. Often I end up having to lie down, sometimes for hours, to get over it. But accept help? Say "Yes, thank you." when someone offers? Oh no. That is a fate worse than death.

What is it about accepting help? Is it an admission of weakness, of giving up control? Is saying, “Yes, I need help” a ceding of independence?

For me, and for my friend Jean, once we talked about it, we realized, at least for us, that is exactly what it is. We prefer to struggle, hurt and harm ourselves rather than accept help. Rather than swallow our false pride.

It is said pride goes before the fall.

We both were silly, preferring to take the chance of a literal fall. We blinded ourselves, unable to see the offering of a hand, and the acceptance of it as a gift -- a gift to the person who offers help when we acknowledge their kindness by saying, “Yes. Thank you.”

It can also be a gift to ourselves, if we see the “Yes. Thank you” not as a weakness or giving up control, but as a strength.

It takes courage to say, “Thank you. I can use your help.”

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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