CW // Contains discussion of mental health concerns and suicide.
Whether mental or physical, I have always had the ability to write about my pain. Face to face, vocally, and out loud, I am not as articulate. It is easy for me to downplay things because I am socially awkward. Talking to people seems like something that comes fluently to others but not to me. Human interaction feels as if I don’t know the language or cultural rules, even when it is my own. Because of this, hiding my pain has also become a talent of mine.
For the last few years, even on the days I would make jokes with people and smile, I really came home and felt defeated. I was still in the process of grieving what I thought my future would be. I don’t think there is enough acknowledgment of how emotionally heavy it is to be unwell physically. I am overly aware and experienced. Every day was a cruel reminder from the moment my eyes would open. If I didn’t sound enthusiastic during greeting exchanges, people would say things like, “Well at least you woke up today, right?” Deep down, I wanted to say no, it would be easier if I didn’t.
That may sound dramatic but no one enjoys feeling unwell, and the permanence made it particularly difficult to cope with. If you’re relatively healthy besides having the occasional viral or bacterial illness, or torn muscle, or post-workout burn – I want you to imagine that every day of your life you have the flu, are recovering from an intensive workout, and have a migraine. That is still not equal in comparison to what we go through. Nonetheless, if that was your reality, you would become fed up and find it an inconvenience to your daily tasks. After giving birth to two children without pain relief, I can confidently say that I would go through the intensity and agony of childbirth once a year if it meant not having to endure chronic pain every other day of the year.
But with no choice of that matter, I have. Year after year, I have endured everything from daily migraines and diarrhea, joint and tendon and muscle pain, collapsed and prolapsed and herniated organs, failing autonomic functions, daily subluxations and dislocations of joints and tendons, nausea, incontinence, dizziness, breathlessness, overwhelming fatigue and so much more. When I would pursue treating one symptom or body part, another symptom would arise and another body part would malfunction. Would you be surprised to know that, despite all of this, I can say that I would rather wake up now than the permanent alternative? I am moving onto acceptance of my ill health.
I have not made it to the finish line but it has been a journey, one in which I feel myself inching forward. Getting diagnosed with an incurable condition seems like a fallback in terms of growth. For me, it has proved the opposite. The languish and deterioration of my vessel, this body, has shown me how much our souls are what define us. Our bodies provide housing for us and its job is very important. Exhausting, I can imagine, especially when one’s connective tissue, the foundation of that body, is defected. But if I focus on what makes the house, I will forget what makes a home. I dwelled in self-hatred, so much that I regularly thought of ending my life because I presumed myself to be a waste of life. I blamed my genetics for my faults – Ugly. Awkward. Weird. Decaying. Crippling. I missed out on the enjoyment of my soul when I was focusing on the physical. Unbeknown to me, my genetics were in fact a cause of more than I ever knew. Unlike before though, the explanation has been comforting.
A common question in the chronic illness community is if it is worth getting a diagnosis. This is a reasonable question, with pros and cons that accompany it. The usefulness of a diagnosis depends on each individual, their purpose, how much effort they are comfortable or able to put into it. Pursuing a diagnosis is a decision that can require years or decades, and for some an awful lot of money and traveling. Myself? It has required traveling, debt, and a decade of my life. I longed to find an answer so I could get better. Simultaneously, I was aging.
When you have Ehlers-Danlos, your body ages faster. To give an idea, my spine began degenerating in my early twenties. I often considered if it was time well spent to feel better for a short time. I didn’t know if a diagnosis was around the corner or I would be 40-60 years old by the time it came. Sometimes I even pondered about the probability of if I would be 70-80 and near death. When it seems impossible, anything seems possible. Nonetheless, I did not give up because even a day in this kind of pain is too long. It was surreal when it happened but it didn’t take nearly as long as I had anticipated, though still too much time for a condition that entered the world with me at birth.
I was 28. Not yet the “dirty thirty”. “Well-loved but with plenty of life left” – in my case, substitute the “well-loved” with “well hated”. However, getting diagnosed was important for me in more ways than I thought it would be. I found acceptance for the physical struggles and limitations of my past and present. I received validation. I found support in an amazing community of other chronically ill people. I allowed myself to not feel shame from using mobility aids or other spoonie tools and hacks. I came to accept my circumstances and genes as no fault of my own. I found my purpose in this journey and it is advocating for those with Ehlers-Danlos and bringing awareness to its existence. Most importantly, I have started to vocally speak for myself, even when it is frightening.
Today I took the chance, after years of knowing it was inevitably coming but being afraid to mention it, and asked my doctor if he would vouch for me to continue my short-term disability and then go on long-term disability. He didn’t even hesitate and offered more than that. He told me, “I would love for you to be on permanent disability.” In finding confidence and assertiveness in my needs, I have created opportunities to fulfill those needs. Being sick seemed like the end of my life but it isn’t. My future isn’t what I expected but it’s brought more things than I thought were possible. Accepting my illness has been followed by acceptance of myself. After hating myself for over twenty years, that change in perception is worth everything and it has created a domino effect around me.
