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  • Alex Dean

My Story - i.e. Accepting a new normal...

I have always been sick, I just didn't accept it.

Earlier this year, after 3 years of searching, I received a diagnosis. Some may think that being diagnosed with a Chronic Illness, particularly one without any cure or standardized treatment plan, would be bad news. For me, however, this was what I needed. This was validation for my experiences day in and day out. This was a moment of celebration because it meant that I wasn't overreacting. Something was wrong with me. My experiences were real. My pain was real. I was sick.

Let me explain a little.

I'm "double-jointed." That is to say, my fingers and knees and hips and everything basically can bend in ways that are not normal. I loved doing "party tricks" for my friends like bending my fingers back on themselves or locking them in a backward position which can look rather freaky. I could contort myself into odd shapes. I sat "W" style (and continue to do so to this day). Sometimes I would feel like a joint "went wonky" and would have to bend and move to get it "back in place."

I'm also rather clumsy. I trip on air and over my own feet. I haven't known a year where I haven't sprained my ankle. I wake up to find bruises on my body which weren't there the night before. I have a bad sense of bodily awareness and walk into desks and doorframes and coffee tables on a regular basis. I regularly either step too far or too short on stairs, causing myself to trip if not fall down the stairs entirely.

I've been in some level of pain for as long as I can remember. I genuinely cannot remember a time where I didn't have some ache or discomfort. Sure, a while ago my pain was probably regularly around a 2 or a 3 back when I was maybe in high school, but it was pain none the less. I would have days where the pain shot up and I would joke with friends to just cut my legs off they hurt so much, or nights where I couldn't fall asleep because the pain was so bad. Those were irregular days though and, especially when I was young, the pains were dismissed as "growing pains." It didn't matter that I've been 5' 0" since early in high school, the pain was dismissed. As time went on, the pain got worse. I would have more level 3, and 4, and 5 days.

Even more, I experience regular periods of lightheadedness and if I'm not careful I will experience full fainting episodes. I used to faint quite regularly. After experiencing this several times I learned the signs that my body would give before an episode, allowing me to do what I can to avoid them. This involves sitting down where I'm at, stopping any movement, closing my eyes, doing breathing exercises, and even laying down flat on the ground.

I also have digestive problems and regularly experience GI distress. I can eat the same thing for weeks at a time, and then one day my body and stomach just decide that it's not good anymore and I end up in the toilet for hours on end. I've tried other diets or meal plans, but they've been so hard to keep up with that I end up stopping before I've started.

So, to add this all up. Digestive Issues. Joint Hypermobility and Pain. Clumsiness and bad bodily awareness. Fainting. Joint Dislocations and Subluxations. On top of this, add an anxiety disorder, ADHD, PTSD, and Depression. It's a wonder that I thought I was healthy and normal, but I genuinely did. I didn't realize that a teenager doesn't typically experience pain that kept them up at night or that it wasn't normal to need to pop my shoulder or hip "back in place" regularly. I didn't know that I should make a big deal out of my back pain because I didn't know it wasn't normal.

Everything came to a head about 3 years ago when I really came to realize and acknowledge that what I was experiencing wasn't normal and that something was different with me. My clumsiness, pain, GI distress, and fainting episodes all got worse as I began working towards my master's while holding a job. I could feel my health deteriorating rapidly and became increasingly worried about what was happening. I worked with doctors, searched online, and generally tried to find out what was happening to me.

This is how I learned about Ehlers-Danlos and found one answer that could account for all of my problems in one way or another. I didn't care that EDS would mean there wasn't a cure. I didn't care that EDS would mean this is something I'd live with forever. I didn't even care that EDS could mean things would get worse over time. EDS was, and is, a godsend because it meant that everything I was experiencing was real. It had a name.

Today, I am learning what EDS means for me. Some days are better than others. I have more medical expenses than I did before getting this diagnosis, and I do still struggle. Even so, this diagnosis has given me a confidence I didn't have before. I've met others who live with this diagnosis and can share their experiences with me. I'm able to learn from others how I might better balance my needs and my work, how I can set better expectations.

It's an uphill battle and one I will be on for life, but I feel like I'm better prepared now that I know what I'm dealing with. I have tools, resources, a team of doctors, and a group of peers to help me through. I don't feel as scared anymore.

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