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by Lindsay L.
It’s Saturday–my day off from work–and I woke up feeling good. I opened my eyes and noted that I did not have a migraine or even a lot of neck pain. So far, so good. I scanned through the major joints and body parts like I do every morning upon waking, assessing pain levels and building an idea of what my day would be like, health-wise. Off to a good start. I was anxious to grab some coffee and a sports drink (electrolytes help the autonomic dysfunction and a little coffee helps prevent headaches, so this is my standard routine), do my morning meditation, and get to work writing this article. Hypermobile Ehlers-Danlos syndrome (hEDS) had other plans for me, though.
Standing in the bathroom, getting ready to wash my hands, something shifted in my upper back, sending shooting pain into my neck and shoulders. This happens frequently in my middle back, causing painful, muscle spasms, but it’s less common in this area. I probed around in my upper back and shoulder muscles, trying to find the aggravated culprit, but I had little success. Regardless, I cataloged this pain in my mental pain file, and sprang into action, grabbing a muscle relaxer and an over-the-counter pain reliever. I grabbed one of the myriad blue ice packs out of the freezer and I crawled back into bed.
I’ve learned a lot about pain and self-care since August 29, 2016. That’s the day of my official hEDS diagnosis at the age of 34, a diagnosis I fought desperately to obtain. Since then, I have learned that managing my hEDS symptoms requires a complete change in mindset and the establishment of an always-growing routine of coping strategies. I’ve collected many “tools” for my “EDS tool-kit” meant to counteract both acute and chronic pain, as well as the other hEDS symptoms. I’ve become more proactive and less reactive.
The mindset change was the first step for me. I had to accept the fact that I have a disorder that causes me pain and fatigue, and that my life will not look like what I had planned and wanted. I’ve done a lot of work mentally since then, but I still grieve the loss of my planned life sometimes.
I see two amazing physical therapists, one of whom has EDS herself and works with the chronically ill. She knew when we met that I needed to accept this mindset change, and she slowly initiated me into it. In my pre-EDS life, I exhibited many behaviors that do not serve my health very well. I did anything and everything until I was absolutely spent and could not do it anymore. My biggest fear was coming across as lazy, and I took pride in my strong work ethic. And so I had to learn that just because I can do something does not mean that I should do something. Pacing, as they call it, is vital. I understand and accept this concept, but I still struggle with its application.
Once I accepted that I needed to change my outlook in order to live life to the best of my ability, I started collecting my aforementioned tools. I learned about chronic versus acute pain and how we EDSers must have strategies for dealing with both. I started doing gentle exercises my PT gave me to strengthen my core muscles. I learned about icing and medication. About manual therapy. About pain journals. The application of kinesio tape to help the stability of my joints and the use of other supportive braces. The importance of stable, supportive footwear. Ergonomics at work. Strategies for preventing and treating chronic migraine. About physician specialties and the best way to approach physicians for help. I sought out a physiatrist for pain management and had procedures involving the nerves in my neck. Now I am awaiting a visit with a headache specialist, among others.
I’ve learned a long list of adaptations. At home, I use a grabber tool, I sleep on an adjustable base bed, and I schedule grocery delivery so I don’t have to carry heavy items. Grocery delivery took me a while to integrate because I used to view it as a luxury. But I’ve learned that extensive grocery shopping trips require about a day of recovery. I’ve sought support for my mental health and learned relaxation techniques and coping strategies from a behavioral therapist who specializes in the chronically ill. I obtained an accessible parking placard for use at large events that require a lot of walking. This was another area that required me to make a mindset adjustment. I have educated myself and connected with the hEDS community online.
Even with all of this, I struggle daily with pain, fatigue, and the emotional/mental weight of carrying hEDS with me everywhere I go. But I am fortunate to have the resources to access all of my tools.
I’m aware of my privilege. While I pay dearly for my medical care here in the US, I know there are a lot of EDS-ers out there who lack the ability to utilize these resources. It’s not fair and it makes my heart hurt.
I’m convinced that without the cumulative effect of the tools I utilize, I’d be on total disability. But I feel like I’m in a strange limbo between able-bodied and disabled. I sometimes resent the amount of time I spend and the effort I must make simply to carry on as best I can. I fear for my future sometimes. How will I survive if I have to go on disability someday? How will I take care of myself for the rest of my life? How bad will my symptoms and pain get? And on a broader level, what am I supposed to do with my life? How can I help others despite my limitations?
Sometimes I look at the growing list of diagnoses, meds, and physicians I see and I feel like a hypochondriac. I’m taken back to my pre-EDS days when almost every medical professional I saw proclaimed me to be “normal” because blood tests and x-rays showed nothing of EDS’s effect on my body. I was invalidated and written off so many times that the anxiety and hurt are still there and they force their way to the surface on occasion. I regularly gave up on medical intervention, getting by until I felt so bad I had to try again. In addition, I was very overweight for most of my life, and if I received $100 for every time a doctor told me that weight loss would cure all of my problems, I wouldn’t have to worry about my ability to work. Ironically, losing a large amount of weight left me with more physical pain and it started my journey to my hEDS diagnosis.
As I reflect on the past several years, I understand how pain changes a person. Feeling misunderstood by loved ones and society in general. The amount of acting we must do to put on a happy face and carry on with our lives. The roller-coaster of emotions. The pain of feeling like a burden. Our lives shrinking to where we can no longer do the things that bring us joy. Watching others who are out having fun living their lives and wishing we could do the same. The reduction of our lives to a series of cost-to-benefit ratio decisions, where staying at home usually wins out.
Despite the anger, hurt, and frustration, I’ve managed to find a silver lining in the shrinking of my life. It has forced me to prioritize in a way that healthy people may not have the perspective to do. It’s taught me that it’s okay to ask for help. It’s taught me empathy and how to be a kinder, more caring person. It’s taught me that I must focus on the present moment, rather than analyzing the past or fearing the future. It’s taught me that I am stronger than I realized.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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