The 'Illness-Splaining' I Deal With as Someone With a Chronic Condition

We’ve all heard about mansplaining. According to Merriam-Webster, it is when “a man talks condescendingly to someone (especially a woman) about something he has incomplete knowledge of, with the mistaken assumption that he knows more about it than the person he’s talking to does.”

After a couple rough experiences this week, I started wondering if the concept of mansplaining could be linked to illnesses and the constant barrage of “Have you tried this?” and “My friend did this and her illness went away, why don’t you just do that?” While many of these comments are made with good intentions, they are tiring and often inaccurate. While I’m sure some of these lifestyle changes truly did work for some people, many assume that because you’re sick, you aren’t doing everything in your power to try and fix that. I think “illness-splaining” stems from the anxiety that other people feel about the unknown parts of chronic illness and the helplessness they feel. I’m not saying you should never listen to anyone, but it’s important to differentiate between your own anxieties and the projection of someone else’s anxieties onto you and your chronic illness.

For anyone who’s chronically ill, dealing with these comments is a major part of our lives. Sometimes it takes all of my energy just to smile and politely explain that my condition is much more complicated than they realize. I can’t just take a pill or exercise my migraines away; I have a neurological illness. I can take steps to alleviate my pain, reduce inflammation in my body and avoid food triggers, but unfortunately, I’m stuck with this. My heart sinks when I have to explain that yes, I’ve seen doctors and specialists, I’ve tried almost every medicine out there and yes, I have tried many alternative treatment options. The question, “Do they know what causes your migraines?” is like a knife going into my heart. Most of the time I just smile and say, “I wish they knew.” I really do wish they did know. I’d love not to have to be bounced from specialist to specialist, going through test after test just to have a doctor look at me and basically throw their hands up in the air because they have no idea what is wrong with me.

I know my medical history backwards and forwards, I’ve learned about different migraine treatments, protocols and drugs, I have educated myself as much as I can to try and find some sort of answer. Yet nothing hurts more than someone assuming I haven’t done everything I can to get better. I am not an expert by any means, but I am currently living with a chronic, invisible illness that completely rules my life despite my best efforts. To have someone who is completely healthy tell me that my pain is not validated, is not real or that I am not doing all I can is just rude. This week, someone actually told me that if I just ate at different restaurants, my food allergies would miraculously clear up. When I read this, I started crying. This person assumed I was just faking my allergies, that I just wanted special treatment. She doesn’t know about the days I’ve been unable to eat because I got cross-contaminated, or the hours of nausea I experience, or the painful migraines that come less than five minutes after eating something containing a trigger. She assumed I was not careful about where I eat. She doesn’t know I have learned to double and triple check when I eat out, sometimes speaking directly to chefs to make sure that what I am eating is safe. But that’s just the thing. So many people just assume – they don’t think to ask about what is actually true or even have a conversation to talk about stigmas and assumptions.

That’s one of the dangers of having a chronic illness. There are so many stigmatized misconceptions that are still so prevalent. That’s one of the reasons I talk candidly about my illness. I’ve heard it all. My favorite is that all migraines are caused by stress. While it is true that some (emphasis on some) migraines are triggered by stress, it is hardly the main cause for many migraineurs. My response to the millions (literally) of times I’ve heard that is to laugh and say, “Oh, I wish it was that easy!”

I’ve been thinking a lot about my life this week, and about how just a couple years ago, I was ashamed to talk about my illness. I was anxious that no one would understand, that the stigmas and misconceptions would cause people to view me differently. I used to feel helpless or get upset when someone would suggest something to me without any research or data to back it up. I get “illness-splained” all the time, but I’ve learned how to take everything with a grain of salt. That being said, it’s OK to try things people suggest to you. It’s your body, and who knows – it could help! But it has to be your decision, and you should never feel like you’re being shamed into doing something by someone who does not have any prior knowledge on your condition and hasn’t done any research.

Living with a chronic illness is difficult. There are so many unknowns, so many variables that could fall out of place at any given time. You should never have to justify your pain, your experiences or your emotions to anyone. You are the only person in your body; therefore, you know what you are feeling. No one can tell you what pain you feel or how you’re feeling emotionally.

Now that I’ve just written an entire post based on a word I made up, what do you think? Is “illness-splaining” something you’ve experienced?

This post originally appeared on Chronic Migraine Ellie.

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