Is Illness-splaining a thing?

12:19 AM chronicmigraineellie 3 Comments


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 that some of these lifestyle changes truly did work for some people, many people assume that because you're sick, you aren't doing everything in your power to try and fix that. "Illness-splaining" stems from the anxiety that other people feel about the unknown parts of chronic illness and the helplessness that they feel. I'm not saying that 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 that 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 that I haven't done everything that 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 that 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 that I was just faking my allergies, that I just wanted special treatment. She doesn't know about the days that I've been unable to eat because I got cross-contaminated, or the hours of nausea that I experience, or the painful migraines that come less than 5 minutes after eating something containing a trigger. She assumed that I was not careful about where I eat. She doesn't know that 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 that I talk to 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 that 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 okay to try things that 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 that I made up, what do you think? Is "illness-splaining" something that you've experienced? As always, have an amazing, migraine-free week! 

3 comments:

  1. Actually, this is a good "consciousness raiser" for many situations - I'm Thinking about it more broadly as someone much older, more experienced, supposedly a caring, sensitive person and wiser, etc. etc. etc. With the best of intentions, I hear so many of my peers trying to be helpful and supportive as we deal with changes, disappointments, illnesses and, in particular loss !! Time to give this more thought . . .- -

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  2. Oh my gosh, YES! Thank you for writing this (and thank The Mighty for publishing it! As a migraine sufferer, I (literally) feel your pain, but even beyond that, this thinking extends into so many other situations, as well! In the front of my brain is the experience of being a mother of two mentally ill children. Even the most insightful and intelligent of people make assumptions that suggest my poor parenting is what is at the root of their depression, anxiety, ADHD. "You just need to be more consistent." "You just need to be more flexible." Stricter. Gentler. More attentive. Less hovering. "Have you tried...?" the answer to every one of those questions is YES, I've tried it all, spent thousands upon thousands of dollars and hours learning about, researching, and trying every damn thing the experts have come up with to alleviate my childrens' pain and by extension, my own. Some things have helped. Some things made the situation worse. Some things helped until they suddenly didn't help anymore. Any "solution " a layperson with no full understanding of a complex set of circumstances can come up with after 5 minutes - or less - of thought is something, believe it or not, I also thought of many years ago, with the same amount of mental effort you just put into the problem. Only I've been living it, all day and every night, for those years since that same brilliant solution and millions of others entered my mind as well. As you suggest in this article, real, researched, evidence-based therapies and theories are welcomed with open arms. Junk science is not helpful. Arrogant blanket assumptions that those living with hidden illnesses (or their care-givers) are at fault for their own suffering, or are failing to see the obvious, are not helpful. Validation, support, and humility - those are helpful, and in vastly short supply.

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