A quick head’s up: This post isn’t very positive because there’s nothing positive about what I’m dealing with.
I’ve written pretty extensively about my health (I mean, that’s sort of what this whole site is about), so y’all know that it’s not great. I was recently told that I probably have Ehler’s Danlos Syndrome Hypermobility Type, which would explain almost all of my symptoms, from childhood until now. However, I’m fighting to get my record corrected because the doctor put in the note that I do not have symptoms that she never asked me about. Fun!
Those symptoms include atrophic and keloid scarring, tachycardia, heart palpitations, heat intolerance, chronic joint pain, joint instability (due to faulty connective tissues in my tendons and ligaments), gastrointestinal problems and a whole slew of other, less serious – but still annoying – symptoms.
I have to be somewhat positive when it comes to my symptoms because if I weren’t I would have already lost my ever loving mind. My normal on the pain scale is a 3, and on bad days I’m couch-ridden. I never know which food is going to flare up my gastrointestinal problems, and something that was fine yesterday suddenly destroys me today.
Disbelief & Dismissal
A common theme among medical staff is that none of these things are real, and that if I just stop thinking about them and/or talking about them, that they will go away. In fact, I recently had a doctor tell me that “everyone has Ehler’s Danlos, just don’t think about it!” as he showed me his non-hypermobile knees.
A couple of months ago I was forced to change doctors due to insurance and the one I have to see wants me off of all of my medications immediately. After receiving a facet injection (which is contraindicated in Ehler’s Danlos, as steroids are caustic to collagen, but since I don’t have an official diagnosis this doctor does not believe me that I have it) in my cervical spine – which has caused me nothing but trouble, by the way – I asked for refills on my medications, which were due later in the week.
“You don’t really want these, do you?” He asked, completely serious.
“No, I don’t. But I need them.” I responded. I don’t want them. I hate being dependent on them. But the fact of the matter is that I am and that they help me.
It’s hard to tell if he doesn’t believe my pain or if he feels that somehow taking away the medications, which allow me to function, will improve it, as that is a common belief these days (along with the stigmatic belief that opioids don’t work for chronic pain). Either way, I’m about to lose my quality of life because of it, since next month he will not be refilling them.
What Have I Tried?
People have told me that I just need to develop coping mechanisms. That I should try not thinking about it so much. That I’m “speaking it into existence”. Have I tried a TENS unit? What about changing my diet? Or essential oils? Or NSAIDs?
I have developed coping mechanisms. If I hadn’t, I would be bedridden and I for sure wouldn’t be able to work 12 hour shifts. Those coping mechanisms allow me to not think about it all the time, but not thinking about it doesn’t make it disappear. And it exists whether I talk about it or not.
TENS units make my pain worse, I’ve adjusted my diet, essential oils may help with mood by smelling nice but do not cure or treat any ailment and NSAIDs gave me a perforated ulcer.
I’ve been dealing with these symptoms almost my entire life. Please believe me that I have tried everything worth trying, and the things I haven’t tried are because I either can’t or because they have been proven ineffective or even dangerous.
Please believe me when I say that I do not like this. That I would give everything I have to not be in pain all the time. That I’m not having fun.
The fact of the matter is that, until safe and effective replacements for opioids are created, some of us need them. What do we do when none of the treatments work? According to my new doctor, we abandon the patient to a life of misery.
I feel like a burden to everyone around me and I keep new symptoms to myself because I know that everyone is sick of hearing about it. That’s how I ended up with a perforated ulcer, by the way: I ignored multiple symptoms. The worst part is that I know they would have been dismissed, too.
I am only one in a growing group of people dealing with similar problems, and I have grown weary of the very people who are paid to help me dismissing me. It has gotten to the point where I am debating taking myself off of all of my medications and turning to marijuana and kratom. This, of course, will mean quitting my job and losing not only my source of income, but my health insurance, as well.
I refuse to allow myself to be subjected to injections that make my issues worse, and I for sure am not going to allow them to cauterize the nerves in my cervical spine (“the next step if the steroid injections don’t work”). Because no matter what, they are taking my medicine – whether these treatments help or harm me. When I tell them this next month they will fire me as a patient because, to them, refusing potentially dangerous treatments means I don’t want to get better.
I have come to the end of my rope and I cannot fight them anymore. Although my illness is invisible on the outside, imaging tells an entirely different story. However, if I stand up for myself by pointing this out, I am a drug seeker.
I am usually a pretty positive person, but I am in a lose-lose situation and there seems to be no end in sight. I’m fighting against a wall of dismissive stigma that grows by the day and I’ve run out of weapons.