Somehow I had a strange insight when I was a kid. Well, the insight wasn’t strange, but having it at such a young age is probably unusual. I realized that if I ever used my pain as an excuse to get out of doing something when it really wasn’t a problem, no one would ever trust me again.
Maybe that’s why I felt so defensive today when someone accused me of that.
Ok, I’ll be fair. She thought I was doing it in an honest way. We were talking about her upcoming move out of state, and I said that I’d love to try moving someplace for just 6 months. I’d store my things in my parents’ basement and rent a furnished apartment near the ocean in Maine for 6 months, just to see how I liked it. She loved the idea, and pushed me to consider it. I pointed out that I couldn’t even think about it until my health was better. She asked if I was using my health as an excuse because I was really just scared to try it.
So I went on the defensive. I don’t talk bluntly about my health problems, but I’d had a recent setback that she hadn’t known anything about, and I was in no mood to have anyone suggest that being away from my doctors for 6 months was a problem only in my own mind. I told her something that she probably hadn’t realized: that while none of my health problems are fatal, that’s because they’re not fatal with proper treatment. But without proper treatment, yes, they could kill me. Ok, I didn’t happen to mention that death would take years, maybe decades, but that’s beside the point, right? And in the meantime, things could get awfully bad.
I’ll admit, I’m more fearful than I used to be. I used to jump at chances. Now, I’m weary. But who can blame me? So yes, I don’t take as many chances as maybe I could, or should. But then again, I take a lot of small risks on a regular basis, so who’s to say what’s right?
As for moving away for 6 months, I know that’s a risk I shouldn’t take. I don’t have a single doubt in my mind. What if I’d been away a few weeks ago when things went bad? I wouldn’t have gotten my blood work done, which means I wouldn’t have known to adjust my thyroid meds. I was having horrible symptoms of adrenal insufficiency, but I didn’t realize it until my naturopath pointed it out. My pulse was low, but I hadn’t checked it. My blood pressure was so low that she couldn’t even hear it. She tried three times. A machine wouldn’t have been able to read it either, so I wouldn’t have known about that. And if I was in Maine, I wouldn’t have visited my naturopath and started on folate (which I should have done a while ago, to be honest.) I would have gotten worse and worse until I couldn’t properly care for myself. Eventually, my parents would have had to come get me and take me to their house. I would have been bedridden. Now, I’m already seeing a bit of recovery. If I hadn’t caught it early, recovery could have taken months or years. So I have no doubt.
Even so, it sucks to have my judgment questioned. I know it’s hard for health people to understand this. As I pointed out to my friend, we’re taught that when you get sick, you take medicine and then you’re better. But for some of us it doesn’t work that way. We take the medicine and we stay sick. Sometimes we get even sicker. If we’re lucky, we stabilize. That’s what happened to me, I stabilized. Then that went to hell. I’ll probably never be stable. I may never be able to move away from my doctors for 6 months. I’m ok with that. I just need my support network to be ok with it, too.
Your last paragraph really made me stop and think for a while. You explained it perfectly–why I feel misunderstood by healthy/normal people. I’ve heard this many times: “Gosh Kelly, you’re ALWAYS sick!” I suffer from chronic migraine attacks, usually in clusters, so I’ll be okay for a couple days and then be hit with like 4 or 5 days in a row really bad. That’s why a chronic illness is *so hard* to explain to those people who only get sick a couple times a year. You really nailed that explanation. Thank you!
Thanks Kelly. I’ve been spending a lot of time lately thinking about where all of the misunderstandings come from, and I’m slowly putting the puzzle pieces together. I think that’s one of them.