A Mother Finds Her Chronic Pain Tribe

A Mother Finds Her Chronic Pain Tribe

There was a time in my life when I was genuinely lonely. I reverently refer to it as my “whitewashed life” because for the outsider looking in, my actions gave the appearance of being pleasantly put together, all nice and clean. But the reality was that beneath the business of working full time, managing the health care needs for my medically complex children and trying my best to be a “good” mom, if you looked closely, you would see that my foundation was dry, cracked and brittle. And, although there were people in my life- understanding co-workers, compassionate friends, and a supportive family- who cared about my well-being, I was missing a key component- authentic connection.

It is human nature to desire to be a part of something bigger than ourselves. To be a contributing member of a group. It’s why we join clubs, participate in activities and go to events. But when chronic illness is a part of your life, your ability to commit to these activities is greatly limited. And when you are the parent of a chronically ill child, or in my case, children, your commitment lies elsewhere. Friends disappear, life moves on without you and your “whitewashing” continues.

Don’t get me wrong. It wasn’t that the people in my life weren’t meaningful to me or that they didn’t enrich me somehow, they did, it was simply that because my life differed so greatly from theirs that we often had little in common. I simply wasn’t finding people who wanted to talk about the kinds of things I wanted, or better yet, needed, to talk about, and most of all they didn’t really understand.

On a particularly lonely day I reached out to a friend and shared my feelings of seclusion, sadness over missed opportunities, worry for the future and the overwhelming feeling of being “lost” and asked, “How do you do it?” Her reply was simple. “I found that finding a tribe of people who are rowing the same boat is so important. Reach out to groups and like-experienced people. You fit. Your kids fit. It’s just that you don’t likely fit with the norm. (Normal-whatever that is-is overrated anyway!). Find your tribe.” But who? And where could I find them?

I spent a lot of time searching for other moms who were talking about what I was craving to talk about. My memberships in various Facebook Groups grew and I found surface level support. But my insatiable need for in person connections remained. Something was still missing, I needed something deeper. Focused more than ever, I continued my quest to find what my friend had described as my “tribe”.

And then it happened.

In May 2019, I registered our family to attend the Pediatric Take Control of Your Pain Retreat sponsored by the U.S. Pain Foundation. It was an opportunity to escape our medical routines, have a quick family getaway and gain new insight to managing my children’s chronic pain.   The retreat offered a parent education track and pediatric education track as well as a family fun day- something we all needed. I remember walking in and feeling an immediate connection- this was it! These were the people my friend had told me to find. Throughout the weekend we laughed, we cried, we comforted. We encouraged, we pondered and we problem solved. We embraced our vulnerabilities and immersed ourselves in genuine discussion. They fed my cravings and best yet, my quest for authentic, in-person connection was complete. The women I met filled my loneliness. They were rowing my boat. And just like that, when I least expected it, I found my tribe.

Since that time, my tribe has encouraged, equipped and empowered me. This group of like-minded individuals has helped me to accept myself for who I am, allowed me to acknowledge that doing “my best” is “good enough” and inspired me to become the best possible version of myself. We support, we celebrate, we offer grace and by doing so, we have found that our shared experiences are more compelling and make each one of us stronger. This is my tribe and it has changed my life.

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Authored by: Jennifer Potter

Jennifer Potter is from Houston and works as a pediatric speech language pathologist. She is the mother of two pediatric pain warriors and a US Pain Foundation patient advocate.

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Jennifer Turner

I’m so happy that you found a group of people you can really connect with. I’m in a couple of chronic pain groups on meetups.com, but I’m really only able to go to one, and I can’t make it to that one for every meeting. But neither can they! Finally there are people in my life that get it. They don’t get mad at me if I have to cancel something on the day it’s scheduled. They don’t get irritated if I can’t keep up with them because there’s nothing I have to keep up with. If we do something it’s all at the same pace. I went to see my family across the country last year for Christmas and they got mad at me (and they were sad) because I had to lie down while they were watching Christmas movies on Christmas Day. It was hard enough just to travel to them and keep a cheerful attitude the whole trip. I had to lie down for a while. I wish so much that I could trade places just for one day with everybody that doesn’t understand. I was kind of worried this year that I wouldn’t have anything to do for Christmas. My old friends have scattered. I finally started making connections with the people in this group and this year for Christmas I went to one of the girls houses. It was so nice because she had to lay down while we ate dinner so we all went into the living room and I kind of laid back in an easy chair. We watch a Christmas movie and just relaxed. Everyone had something that was hurting them. Of course I’m not happy to see anyone hurting I’m just happy that I have people that understand and we can help each other. And you’re right, what is really “normal” anyway? The people that aren’t in pain aren’t necessarily normal, they’re just able to do things that I can’t. Thank you for your story. It made me appreciate my little pain group even more. Wishing you the very best!

Diane

I have found myself being chronically ill, feeling very lonely. I have one friend I can count on.i also have PTSD so going out of the house is hard. I decided to go to a free Kabbalah class and it has improved my life. I think I found my tribe in them. Although I was invited out today 30 minutes from my house. I found I couldn’t do it alone. I wish I had asked someone to drive me but I didn’t. I hope I can overcome this and really become part of the tribe.

Maureen M.

Dear Jennifer, what a wonderful, heart warming story! As a fellow CP warrior who understands the loneness you speak of, I am so very happy for you and your children to go to that camp and find what you were searching for! You have been blessed! Hugs to you and your children! Keep strong Mama Warrior! Maureen M.

My dog is dying of thyroid cancer and vet wanted to give him nsaids for pain. I said he continues to have diarrhea so stomach is inflamed and has been for since August. The vet said we don’t give pain medication anymore. So I’m in the process of thinking of just putting the dog down so he doesn’t have to suffer. Found an article aafp.org title study: misuse of certain non opiate analgesics on the rise. Gabapentin, Baclofen maybe seeing as opiate alternatives by MD Michael Devitt. He feels he’s medications can be misused / abused.AAFP & other health groups join forces and made significant strides in combating opiate misuse. Says before overdosing on these medications and dying. I don’t understand why they want to torture people who’s already being tortured. Seems they want to strip away what minut medications that really don’t work for pain but they act like they do. So they’re going to attack those medications as well. Before long I will have is aspirin. They’re letting my dog suffer because he can’t take nsaids with the inflamed intestinal issues . I started taking pictures of the diarrhea to prove that the dog does have diarrhea. I gave proof of where I had to have him IV fluids from dehydration from diarrhea. He has a lump on the side of his neck have the size of a egg that’s the size of the thyroid cancer. I would not take my dog’s pain medication. I love him I’m not that selfish. I can’t imagine having children that are in chronic pain. How heartbreaking during this time of being under attack just because you have pain. So ridiculous how we are treated as if we were children. I do not feel the pursuit of happiness at all. I would love to though.