I would rather spend the rest of my days banging my head against a wall than to continue trying to explain to people that their essential oils and kale will not cure me. OK, I’m being dramatic, but not as much as you might think!
If you’re anything like me, when you first became chronically ill (if you’re reading this as someone who’s sick), you possibly went through a naive stage early on in your illness. The stage where you believed the random person in an elevator who’s known you for two whole minutes who said that snake oil was God’s gift to the ill, or your aunt’s cousin’s brother’s half-sister who swears by this new detox where you only eat eggs for a month and every illness ever will be reversed, or some crap like that.
But seriously, there was a period of time at the beginning of me being sick that I desperately held onto the belief that I had control and would get better, so I tried anything and everything anyone presented to me. The worst was this “joint juice” concoction my dad ordered off an infomercial that tasted worse than words can describe. Yuck.
After awhile, it became something I did out of spite. Eventually there were few things left that I hadn’t tried, but when someone offered me something new, I would try it to prove to them how wrong they were.
When people constantly offer up these things, especially after I’ve spent time telling them my story, it doesn’t come off as helpful. I know, I know. People generally mean well. Sure. I’d like to say I believe that. But there’s condescension there almost always. And disbelief. And disrespect. It’s a smack in the face. It’s basically people saying to me that I just must not be doing enough or else I’d be better.
We as humans don’t like to lose control. We don’t. I certainly don’t. It’s not fun. We try to control every aspect of our lives. We love to plan out how every minute of everyday is meant to be spent and we think we can control that.
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But the truth is, we can’t control everything. We cannot always control our bodies and our health. I know it’s scary to realize this, but it’s true. And I think that’s a big reason why one of the most common reactions people have to finding out that I’m chronically ill is to give me advice (that I didn’t ask for) on how to get better (from my incurable diseases). They want to help, but they want even more to keep up the illusion of control in their world. They’d rather believe that it’s essentially my fault that I’m not better because I’m not doing something right, because I don’t have the proper self-control, than to acknowledge the lack of control we have over our lives.
So what all of this unsolicited advice says to me is, “I didn’t listen to anything you just said because I’m scared of facing our lack of control and my mortality. I think you just don’t know what you’re talking about. I know better.”
That’s the truth of it. So the next time you’re thinking about offering up unsolicited advice to someone who’s chronically ill, it’s probably best to just…not.
I’m not sure what changes in people’s minds when someone becomes chronically ill or disabled. It’s as if social norms go out the window. I don’t think any normal, healthy, abled person appreciates unsolicited advice on hugely personal and important aspects of their lives. It’s never kind to go around insinuating that how a person is dealing with an extraordinarily difficult time in their life is wrong or that they’re not doing enough.
It’s different when I come to people asking for advice. But that rarely happens with my health. I am constantly controlling for every possible aspect that is still within my control. I don’t really ask for advice from random people. I ask for support, yes. But not in the form of medical advice.
See, I’m not here to say that our health is 100 percent beyond our control. I know that I still have control over whether or not I choose to continue going to the doctors that I need to see, having the testing I need to have done, and continuing the treatments I need. I have choices to make and control over what doctors I choose to stay with, what tests I feel are necessary to put myself through, and what treatments make sense for me and what I can physically and mentally handle.
I also control my diet and exercise. And not that it’s anybody’s business as people seem to think it is (for some reason unbeknownst to me). I am on a gluten-free diet, and it has not magically cured me. And I was a pre-professional level ballet dancer when I got sick. I wasn’t out of shape or “lazy.” I helped teach ballet last year! And I didn’t suddenly feel great because I was exercising more.
Trust me, I wish it was that easy. I want to get better. I do. Like I said, I’ve tried it all. I really have. And I truly believe that various alternative treatments and things like diets and exercise regimens can help. Help, not cure. There are some conditions that can be “cured” or can go into remission because of certain diets and things, like celiac disease, for example – but a lot of chronic illnesses, especially systemic conditions and genetic diseases, don’t work that way.
While I appreciate people thinking of me and meaning well by offering up advice, when it’s unsolicited, I’d rather just have the emotional support instead. I think people do mean well and want to help, but as I said, the way people often go about it is just not polite, to say the least. It comes off as if I’m not being believed about the severity of my condition and the reality of my life. And I can almost guarantee that I’ve tried whatever you’re suggesting. So thank you for the desire to help, but I’d love to just have you there to support me instead.
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Gettyimage by: shironosov