It’s been a while since my last post. But I read this letter and it gave me insight and perspective on what a doctor works with when dealing with patients like me. I’ve seen at least 1 doctor every month since August after my biopsy. I know see two specialist, one every two months staggered. It sucks. It absolutely blows. It’s interesting though. The chronic illness patient is the achilles’ heel of the doctor-god complex. in most cases, the doctor is always right. The doctor knows best. Just do what the doctor says and everything will be okay. But this is not the case with chronic illness patients. A good amount of the time, the patient knows just as much, or sometimes more than the doctor. while a doctor studied it and then learned mostly through their work and experience, chronic illness patients live it. Research it. dissect it. Rip it apart. Open it up and try to figure out on our own what might have started it.
Most of the time, my doctors don’t have advice. They don’t have a set answer. They’re groping in the dark hoping to find the right therapy. “Oh, that therapy doesn’t work? Let’s try this one. No? Makes you feel worse? Then how about this one? Okay you seem to be tolerating that.” There is just no reassurance. One thing all my doctors have said is theres no 100% chance of remission, theres no guarantee that I’ll keep stable. It’s like having a disclaimer “We’ll try, but no guarantees.” This is a weird combination of legal protection, a doctors own insecurities, and trying to keep the patient realistic about their health.
My first rheumatologist told me that I would have to just take medical therapy for the rest of my life and eventually the Lupus would be controlled up for me to live a “normal-like” life with occasional flare-ups. He also followed up with saying I would never be a 100%. None of it has ever really been reassuring. If anything, it lowered the bar for me. When I felt like 60%, I would think “Good enough.” Because my doctor had set the bar lower for me, I never strived to work off that 60%. I just became stagnant and made no real effort to see if 60% could be 61%.
While I understand my doctors will never say that I’ll be 100%. The limitations of their ability to solve the problem that is chronic illness is what stands in the way. in doing so, they limit my own effort. I’m not sure how much this affects other people. But it was a thought that deeply resonated me. I realized that I had set a limit and I was okay with it. After the biopsy, after putting on almost 30 pounds in water weight and steroid weight retention, having my hair fall out, my nails become brittle, my teeth became sensitive and hurt, my joints becoming swollen and immobile, my muscles atrophying, being hit with random fevers, nerve pain and waking up to migraines, I decided enough was enough. I had decided that come hell or high water, I would spend the rest of my life getting to 100%. Whether it be on my own or with the assistance of a doctor.
A doctors point of view is very scary when dealing with patients like me. We’re not easy to deal with. We’re tired, frustrated that the results are not all that great, annoyed that we’re so tired, ticked off that one week was good and now one week is bad, and all but really to kill the next person who says we look okay or that it is all in our heads. Mostly, we’re annoyed that we’re there again. It’s not that we hate the doctor, it’s not that we hate the system, we just hate being regulars.
One thing that drives me nuts is when a healthy person does not take care of their body. Lets it get fat, weak, and susceptible to diseases that are avoidable with things like diet and exercise. I have no choice, but to eat healthy, I have no choice, but to keep active, because it hurts if I don’t. I have to take my medication on time, I have to keep going, because If i stop moving, it all catches up.