So here goes. I really don’t have the time for this. I have so many other things I need to be doing, but I think this might be helpful. I have a million things I am dealing with and very few people to talk to. I really don’t care if anyone reads this but maybe it will help someone else. I’ve had people contact me on Instagram so we’ll see what happens.
So last year I was diagnosed with a genetic connective tissue disorder called Ehlers Danlos Syndrome. I have the hypermobile type (for now), formerly known as type 3. It all makes perfect sense now. I can piece together all of these events throughout my life and they all fall perfectly in line with this disorder. It makes me want to laugh and cry. Immediately after getting the diagnosis I had this huge sense of relief. I’m not “crazy.” It all fits! And after that sense of relief left, it’s oh shit. Since then I’ve spent countless hours at various doctors appointments. Currently I see my primary doc, an immunologist, cardiologist, neurologist, cardioelectrophysiologist, chiropractor, orthopedist, gastroenterologist, and a physiatrist on a regular basis. By regular basis I mean I have no less than 1 appointment a week. It gets exhausting. I went from taking 2–3 pills a day to 13 pills a day, on a good day. My geneticist (whom I only have to see once a year) recommended I see a therapist because there is a lot to deal with so I found a great therapist. She specializes in trauma. I’ll get into my other traumas later on.
Anyway I’m 29. The reason I don’t have time for this is because I am an assistant professor at a university and this year is my pre-tenure review. I’ve been sick on and off the last few years and I feel completely inadequate. My mentors tell me I will be fine, but that nagging sense of imposter syndrome and dealing with EDS makes me feel like a total and complete slacker.
My last 3 summers have been immensely harsh. That’s the time I need to do research and push out publications, but I’ve been lucky if I can even function. I’ve battled anemia, adrenal insufficiency, and the comorbidities of EDS (Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome), all of which do not fair well in the Georgia heat. And then I got really lucky this summer. I was diagnosed with alpha gal. In short, I’ve developed an allergy to freaking mammals. Yes, mammals. It’s real, google it. So for the last two months I can’t eat any mammal products: no meat, no dairy. I miss soooo many foods it’s ridiculous. Cheese oh how I miss cheese….
I know these are a lot of first world problems I’m actually keenly aware of that. So aware it adds another layer of guilt. I’m keenly aware of how fortunate I am to be able to work when so many with my diagnosis cannot. Im fortunate to have good health insurance (for now). Im fortunate enough to make good money so that I can pay for what my insurance doesn’t cover and have a car to get to my appointments. But, to clarify, voicing symptoms and concerns is not complaining. Say it again: voicing symptoms and concerns is not complaining. Had anyone paid careful attention to those symptoms and concerns when I was younger, I might have received my diagnosis earlier and possibly be in a better situation (I’ll get to this later).
That brings me to tomorrow. Tomorrow I get the results of my 4th MRI this year. I have been having issues with my hips for a couple of years. I had a really bad appointment with an orthopedist in March when I finally decided to go see someone. He pretty much blew me off (long story). Fast forward a few months and I have days where I can barely put weight on my hip. Two weeks ago when I saw my pcp, he was concerned enough to call a different orthopedist to have me seen immediately. The first thing the new guy said when he saw my x-rays (same ones from March) was “it’s obvious these are not the bones of a 29 year old.” My inner voice said “finally.” I finally found an orthopedist who might actually be good. I still have my fingers crossed.
Then the bad news came. He thinks I have AVN in my hip. Avascular necrosis. In short, he thinks my hip is dying. Wtf!?! Now, I’m hoping it’s not that bad. I know something is wrong but for the love of all that is holy I don’t want to have a hip replacement in my 30s. So I get my results tomorrow and that is a big fear.
But then there’s the other fear. Those of us with EDS and probably other people with chronic illnesses will know this fear well. It’s the fear of the doctor saying “everything looks fine.” Being told everything is fine can hurt worse than getting another diagnosis. Ive cried more over “everything is fine” or “I can’t find anything” in the last year than all of the other horrible crap that’s happened. Even losing the ability to eat cheese! (That was a big loss).
Being told that everything is fine or the doctor can’t find anything when you know your body and you know something is wrong, can be completely devastating. Ive literally watched and felt my body change in so many ways over the last few years it’s crazy. I now know that a lot of the things my body does and has done my whole life that I thought was normal is actually not normal. But I also know that my normal now is not what my normal was a few years ago. I know my body and I know when something is wrong, whether it’s a big wrong or a little wrong. So that validation from the doctor at least finding something (little or big, preferably little) is so important.
I just want to know why it hurts. And I don’t just want someone to tell me to take a pill to cover it up. Just tell me why. Give me an answer. That’s all I need whether it’s big bad or little bad. I guess we shall see…