Chronic Rants

We’ve all gotten some form of the question from a non-medical person:

What’s your diagnosis? What have you got? What is it? What’s wrong with you?

But how often do we have an answer?

For a “healthy” person it seems easy. The answer is usually something well-known and straightforward that requires no explanation, like the flu, a broke leg, a torn rotator cuff, allergies. You give that as your answer and move on.

If you have a chronic illness, though, there’s no simple answer.

Maybe you have one straightforward diagnosis. So you answer: lupus, multiple sclerosis, ulcerative colitis, fibromyalgia, Hashimoto’s disease. You’re even kind enough to give the full name instead of saying MS, UC, fibro, or Hashi’s. Even so, the other person has no idea what that is, so they ask what it is. But do you really want to spend 20 minutes explaining it? Probably not. I usually don’t.

Of course, you might have multiple diagnoses. Maybe you have 2. Maybe you have 12. I always have to stop and think before I list mine, and that confuses people. They don’t understand that the list is ever evolving. A new diagnosis is added, another is changed to something different, and yet another is removed. And the list is long, so I usually just give the few “big ones” and I have to choose which those are at the moment. Besides, the list is long enough that it’s hard to remember. That’s why I always keep an updated list on my phone: so that I can give an accurate list to new doctors. But non-medical folks don’t want the full list, and they don’t understand it. See the previous paragraph. They don’t know what most, maybe any, of my diagnoses are, so they want explanations. But I don’t feel like giving them over and over and over and….

Then again, maybe you don’t have any diagnoses. That’s hard for a lot of people to understand. In their minds, if you’ve gone to the doctor, then you should know what’s wrong with you and you should have a name for that problem. Simple. If they only knew. Medicine is a science that doesn’t have all the answers. So maybe you’ve seen 15 doctors and don’t have a diagnosis yet. Or maybe you have one of those “almost” diagnoses. You know the type. Like my first diagnosis was “Undifferentiated Connective Tissue Disease” which is just a fancy way of saying “We know you have the indicators for a connective tissue disease but we can’t figure out which one, or maybe it hasn’t been discovered yet, so we’ll just give you this label instead.” Try explaining that to someone who doesn’t even know what connective tissue is! Still, I was glad to have that non-diagnosis because at least I had a label to give people. When I had no diagnosis at all for 11 years, too many people (including doctors) thought I was making up my symptoms or that my problem couldn’t really be serious.

On top of all of that, you could have diagnoses you think are wrong. I have a few of those in my records. For example, I don’t think I really have IBS. Irritable bowel syndrome was diagnosed by multiple doctors, but now I think I had undiagnosed Celiac Disease and leaky gut as well as some food intolerances. Now that I’ve addressed all of those issues, my IBS has magically gone away. If you suspect a diagnosis is wrong, should you even bother to mention it?

Of course, you could have a combination of these. Maybe you have one or more diagnoses, but more that haven’t been diagnosed yet and others you don’t believe. That’s especially hard to explain. Sure, I can tell someone I have Hashimoto’s disease, for example, and maybe even explain what that is. Then they think that’s it. When I say there’s something else that we haven’t figure out yet, they’re confused. I have a diagnosis. That should cover everything. How is it possible there’s something else? Well, it’s possible because the human body is complex and, yes, it’s possible for more than one thing to go wrong at a time. Saying I should only have one diagnosis is like saying you can’t have a flat tire and a dead car battery at the same time. Yes, you can. And yes, I can have Hashimoto’s disease and sleep apnea and whatever-the-hell-else all at the same time.

I just got curious. Writing this, I realized that I was only remembering a few of my diagnoses, so I pulled up the list on my phone. The first in the list was one I’d forgotten about as I was writing this: PCOS. That stands for polycystic ovary syndrome. It was diagnosed ages ago, but I’d forgotten. Hence the list. And a perfect example of why these questions are so hard to answer.

Over the last few years I’ve mentioned several diagnoses in this blog, but I’ve never listed them all in one place. I never thought it was important. But I know some of you have been curious, so here’s a short list in no particular order. Of course, this isn’t the same list I would have given when I started this blog back in 2011. Back then, I hadn’t yet received at least 3 of these diagnoses, and I had others that I’ve removed from the list because I know they’re really part of something else. So, as of now, they are:

Hashimoto’s disease, hypothyroid, PCOS, Scoliosis, Raynaud’s disease, tinnitus, undifferentiated connective tissue disease, seasonal affective disorder, upper airway resistance syndrome (UARS), adrenal insufficiency, MTHFR mutation (homozygous A1298C).

How do you feel when someone asks a version of, “What do you have?” How do you answer?