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by Jordan W.
It took a while for me to realize I suffered from chronic pain. It started with an injury. That injury just never went away. Then more injuries stacked on top of the first. They kept building until suddenly I realized that I didn’t remember what it was like to be pain-free. I didn’t understand why I was so prone to injury either. My whole childhood I thought I was so lucky to be the most flexible in my class. Party tricks like doing the splits and dislocating your hips at will make the kids on the playground think you’re cool. I grew up in the 90’s, so conditions like Ehlers-Danlos Syndrome were hardly understood, let alone pursued by doctors for diagnosis. I started pursuing my diagnosis in 2016 and didn’t get it until mid-2018 at the age of 27. My choices for sports and extracurriculars leading up to this would have been different had I been given the opportunity to understand my body before now.
Receiving my diagnosis brought me catharsis and remorse. I finally felt validated that my pain was real and I wasn’t crazy or seeking attention. I also had to mourn the life I thought I was going to live and come to terms with the fact that my daily life would always include pain. Suffering from tons of joint-related injuries, many doctors had felt I was just “a slow healer” and all these years of aches and pains would eventually go away. I lived believing there was a silver lining and all the debt from physical therapy would be rewarded with a pain-free existence. But my diagnosis shattered that dream. Waking up one day to realize you don’t remember the last day you weren’t in pain is one thing, but receiving confirmation that you’re going to wake up in pain every day for the foreseeable future is much worse. Now my doctor and I have a treatment plan to help combat the pain. My doctor says that keeping my body strong should help so that’s been my personal plan of attack.
Apart from the obvious aspects of being in pain like modifying my activities to protect my joints, keeping a donut cushion in my car in case my coccydynia becomes debilitating, keeping braces for various joint issues around, and generally running out of spoons by the end of the day, my daily life is affected as one would expect for someone who suffers from chronic pain. When it comes to my physical limitations I’m stubborn, I don’t ask for help when I need it and push myself past limits I probably shouldn’t. I think I’m still somewhat in denial about the permanence of my situation. As time goes on it sinks in, but I am still chasing the dream of rehab. Slowly, I’m realizing my ‘fake it until you make it’ model is faulty. However, in light of pain awareness month, I want to focus on a less obvious topic and that’s how the chronic pain inevitably affects my mental health.
The fear, insecurities, frustrations, and anger that chronic pain brings me can sometimes weigh heavier on me than the actual pain.
Invisible illnesses and society don’t mix well in my experience. Add my Obsessive Compulsive Disorder into the mix and I really, really don’t handle it well, try as I might. When my symptoms progressed, everyone around me seemed to turn into a doctor. Everyone has a cousin or a friend who recommends doing this or cured themselves by doing that. It wears on my mental health to constantly be told by acquaintances I should work out more, go vegan, try these essential oils, etc. Trust me, I want relief or a cure as much as the next person, and I don’t mean to be negative, but there is no cure for faulty connective tissue. No cure for your own DNA. What they don’t know is that despite how well-meaning they are it isn’t helpful, it’s stressful. It reinforces the idea I have in my head that I’m a burden and should be doing more to “fix myself”. Generally, people seem to have a lack of understanding of my condition or chronic pain because they don’t personally have to deal with it. Which is fine, I’m glad they don’t have this. I have probably naively tried most of the things people have suggested at some point, too. But this kind of chronic pain just doesn’t have a quick fix as much as I want it to. I would prefer people’s empathy and an ear if I need it more than their suggestions.
After politely entertaining suggestions on how to cure myself, the next mental stressor and bringer of anxiety for me is the chronic pain denier. Being scoffed at because I don’t “look sick” and being told I’m weak or have a low pain tolerance if I let my guard down wears upon my positivity and confidence. If I casually bring up my pain in the company of an individual who is older than a millennial, it’s with almost absolute certainty that they will discount my pain due to my age. The popular phrase seems to be “You’re too young to feel that way, wait until you’re my age”. I try not to bring it up because then I feel the need to justify myself and explain what’s going on but it’s really no one’s business unless I decide to share.
I’m a glass-half-full person so I don’t like to focus on something that sucks. But I’m at a stage where my pain is noticeable to those around me, even strangers, because of the way I move and modifications I have to make. Even though my core support system is pretty great, it doesn’t erase my feelings of needing to hide my truth and disguise my pain. At work, I’m afraid to ask for modified equipment because I’m worried they will think I’m faking. Like, “if you didn’t need it before, why are you whining about it now?” Mostly, people are great, but there are enough doubters and naysayers in my life that reinforce these fears.
It’s emotionally draining having to defend my invisible illness and chronic pain to people. People just say some really insensitive things sometimes. I shouldn’t care, but I do because I’m human. On the flip side, I also feel insane guilt when it comes to my loved ones. It’s a major inconvenience to reach my physical limits when it comes to commitments and chores. Then I have to explain to my spouse why the dishes are in the sink even though it’s my turn to do them but I can’t because my body decided it’s done for the day or when I cancel plans with friends because I’m too exhausted to function, to drive, or be fun. Thankfully, most of my loved ones understand, but I’m always worried they won’t. It’s not convenient and I worry they will get sick of me. I’m sure it’s my anxiety but it’s a constant fear I have. I fear my condition progressing and becoming more of a burden than I already am to the people that I love. I fear that I can’t add to their lives in a positive way and the scales will tip out of my favor. That they will eventually decide I’m not worth dealing with or worth the hassle. These fears are what lead me to push my limits farther than I should.
I’m not a hypochondriac, I don’t want drugs, and I’m not a big baby. My hope is to raise awareness and be a voice for people suffering from chronic pain and to share my perspective and help others understand what it’s like to cope with this issue. Maybe to help and encourage acquaintances to think before they speak sometimes, too. It’s easy to let your pain win, but for me. I choose to fight. I struggle with pain and exhaustion every day. But I will forever choose to live and strive for joy and positivity. I cope with art. I make films, do photography, train in circus aerial arts, read books, and paint. I enjoy spending time with my spouse and our pets and families and I want to travel the world. My pain will follow me through all of this. This journey that I walk will always have a shadow.
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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