Why I Probably Won’t Be Educating You About My Chronic Illnesses

Posted: June 4, 2015 in Disability
Tags: , , , , ,

I saw this article, about how to deal with people who don’t believe you are sick, on my facebook feed and I clicked it excited to read it and expecting to really like it. But I was rather disappointed in the parts of this article that focus on educating people about your illness, I’m not saying the author’s advice can’t be effective, but the suggestion that this is how we should respond bothers me.

This is certainly not how I approach talking about my illnesses. Let me start with a little story: After the last day of class for one of my classes last semester, me and my classmates went out for some drinks and pizza at a local brewery to celebrate being done with the class and just chat a bit. During the conversation I made a comment about how my health had been worse this semester and I missed more classes that semester (in my other two classes) than I have at any previous point as a graduate student. My classmates who are active on facebook know I have health problems because I complain a lot on facebook about it. My classmates who aren’t on active on facebook wouldn’t necessarily because I don’t talk about it hardly ever in person. It’s one of those topics that’s just easier for me to type about on a computer screen than talk about in person. For a number of reasons I just don’t like talking about my illnesses in person. I made a comment about how I feel like I’m always just complaining about being sick, and one of my classmates remarked on this- how I basically never mention it in person.

So with that little background about me, let’s talk about some reason that I, and I’m sure other, people with chronic illnesses won’t be education you about them as suggested in this article.

Not Everyone with Chronic Illnesses Has a Diagnosis

It is really hard to educate people about your illnesses if you don’t know what they are and have no name for them. If you spend any time following groups where people talk about chronic illnesses then you will probably see people talk about the struggles with getting a proper diagnosis, and the relief when we have a name for what we are experiencing, even if it doesn’t result in any “cure”. One of the most frustrating things for me dealing with chronic illnesses is all the times doctors have done some test that came up negative and they put on some big smile and tell me nothing is wrong, like I’m supposed to be comforted by that. That’s not a comfort, it’s a frustration, and it makes me want to slap that stupid smile off your face. Because when I know something is wrong, what you are actually telling me isn’t that there is nothing wrong, your just telling me that you still have no idea what is wrong- because regardless of the test results, I know something is. And obviously symptoms don’t wait for a formal diagnosis to show (duh), so those who are still in the process of trying to get an accurate diagnosis have just as many if not more problems as a result of their undiagnosed illness- often more since a lack of diagnosis makes treatment harder. The times my meniere’s disease was the worst and the most disabling for me was before I had a diagnosis. I got severe vertigo from time to time that made it difficult to impossible to do things and came without warning, but I had no clue why for about 4 years.

I’m still sort of in this place regarding my fatigue and (non-migraine) pain issues. I’ve gone through numerous diagnoses that ended up not being accurate. I don’t like talking about this in part because I still don’t feel I have a real diagnosis to talk about in regards to it. Although I do have a “what doctors currently think it is”, I have no confidence this diagnosis will stick nor confidence that it’s really accurate. That makes it harder to talk about and hard to educate people about.

It’s Private Medical Information

Honestly, a big issue for me is also that I consider my medical information to be a fairly private matter. If you aren’t my doctor, I’m not going to have an attitude of “ask me anything you want about it!” Obviously people close to me usually know I have chronic illnesses, but I don’t go into detail about them with people usually, I’m not really an open book about it, and I don’t feel I should have to be. I suspect most able-bodied people would find it odd if I started asking details about their medical histories that they are used to only sharing with a doctor. I mean, hey, if the topic comes up, people are likely to ask questions, that’s life, if a friend of mine brings up her cholesterol from a recent doctor visit, I am likely to ask follow up questions for more info. And if she says she isn’t comfortable answering, that’s fine. Just the same I don’t get angry at people asking questions I open the door to, and I will either answer or say I’m not comfortable based on how comfortable I am with the question, and that should be fine too. I just don’t think I automatically owe people any and all information relating to my illnesses.

Also, sometimes chronic illnesses deal with things we aren’t comfortable talking about. Talking about my migraines isn’t really embarrassing or anything for me. When I had bleeding in my digestive track that lead to me being severely anemic from the blood loss, that resulted in me ending up in the ER and having to take quite a bit of time off work because I couldn’t even walk across the room without experiencing pretty intense tachycardia (a result of anemia because my heart was attempting to pump the lower blood volume faster to keep up with the oxygen demand from muscles throughout my body). I mean, talking about being anemic isn’t embarrassing, but talking about where the blood loss was coming from and the testing that was involved in that, kind of was… kind of still is. There are a lot of aspects to our health that most people find uncomfortable to talk about.

We Don’t Always Want Advice

One reason we may not talk about it is because when you open that door, people want to start offering advice, and we don’t want to deal with those responses again and again. So it’s easier to just not talk about it in the first place. This may be less common for the author who has a rare disorder most people have never heard of. It’s a bit different I think when your invisible illness is something people have heard of. For example, I don’t think I’ve ever gotten unsolicited advice about my meniere’s disease, if I have I’m blanking on it. But when I say meniere’s, the majority of people have never heard of that before. So there is a lot less “ya know I read online that x helps, have you tried that?”, or “My friend’s sister in law has that and she says x is the best, have you tried that?” By contrast mentioning migraines is far more likely to result in advice on it. Especially since it’s not just something that people have heard of, it’s something people misunderstand the meaning of. So many people think a migraine is just a bad headache, so they apply what works for them when they have a bad headache to chronic migraine sufferers. One piece of advice I’ve gotten numerous times is “have you tried exedrin migraine? That’s supposed to be really good!” No! I’ve had chronic migraines for 18 years and tried, I don’t even remember how many, prescriptions drugs in addition to over the counter medications, and herbal supplements, but I have never tried a very common over the counter medication with “migraine” in the name of it. I get a lot of advice about fatigue too, like “have you tried caffeine pills?” or “you just need to make sure you get at least 7 hours of sleep a night!” (that last one will really make me stabby fyi. I fucking wish just 7 hours of sleep got rid of all my fatigue problems) because that’s another thing people think they understand when they don’t.

Chronic Illnesses are Frustrating!

This is the biggest reason I don’t like talking about my chronic illnesses with people is because living with them is frustrating! And talking about all the frustrating aspects of it makes me revisit that frustration and I hate having to do that. I don’t want to have to think about how frustrating it is any more than I already have to.

And educating about it can be frustrating when the effects are complicated and varying. Like trying to explain symptoms that can come up but usually don’t. Like how a common illness (like catching a cold) interacts with your chronic illness. So I have to explain not just my chronic illness but then the ways it interacts with a variety of other temporary ones. Or when one illnesses causes another. I feel like my health is very much a dominos issue. There are so many side issues that are caused either by one of my “primary” illnesses directly, or caused by a medication that was or is being used to treat one of those! For example I have kidney damage and am prone to developing kidney stones from a side effect of my meniere’s medication. Add in that even if some of the issues are diagnoses, maybe there is something new that has happened or sometimes happens that may or may not be related to one of the diagnosed issues… Like when I had that bleeding problem it wasn’t clear the cause or if the cause was related to one of my already diagnosed issues. And how illnesses present can change too! For example, I’ve started having migraine symptoms that I didn’t have 18 years ago when they first started, which I’m told by my neurologist is relatively normal to happen.


This is maybe not a good reason, but to be totally honest, this is one reason I don’t like talking about it. Because a lot of the time I like to try to deny to myself even the full effects of my health issues. I’m not sure how common this is for people with chronic illnesses though I suspect it’s probably more common for people who develop them later in life and haven’t always been used to dealing with the consequences. I know that is a factor for me. Although I’ve had chronic migraines for 18 years, alone for most of that time they were not that big of an interference for me. Chronic Illnesses haven’t been a big problem for me until starting about 7 years ago or so. That not so long ago. It’s a recent enough problem that I still remember very well what life felt like without these issues. And there are a lot of times I just want that back so much I try to convince myself that I can have it if I just pretend I’m not sick. That obviously doesn’t actually work but regardless of how wrong and illogical it is, and not really a great coping mechanism, it’s still a factor.

I Don’t Like to Complain

If you only know me through facebook, you probably wouldn’t think this. One of the reasons I feel more comfortable talking about it and complaining about it on facebook is that people can either scroll right past my whiny posts, and/or adjust what posts of mine, if any, show up on their feed. If I’m talking to you one and one in person, you kind of have to listen to me when I start complaining and I just don’t want everything I talk about to be talking about the difficulties caused by my illnesses.

For people with chronic illnesses who want to work on educating people about their illnesses, that’s great. But for people who don’t have chronic illnesses, don’t expect that everyone you encounter with one will or should invite you to lunch to talk about it and tell you to feel free to ask any questions you have about it.

(And in fairness to the article, it still has some good advice not related to educating others, like setting boundaries, not feeling guilty when you have to prioritize taking care of yourself, and finding a support group.)

(Updated this post to add some info I forgot the first time around)

  1. I for the life of me cannot fathom why people in the disability community think it our responsibility to educate any and all curious people, and yet I know many who do and who shame those who don’t by saying that we are poor advocates.

    • ebay313 says:

      seems like this comes up with most any oppressed group with certain people feeling that people are owed explanations and answers to any questions they have. Which is really frustrating.

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