Here’s what I need people who don’t have a chronic illness to understand: Just because your body functions properly and you are “healthy” doesn’t mean you’re doing something better than me. It doesn’t mean you’ve cracked some code that I haven’t.
It has taken me a long time to understand this, and why wouldn’t it? We live in a culture that is obsessed with finding the secrets to optimal health and wellness. If you don’t fit within the parameters of “what works” it’s often assumed you’re clearly doing something wrong.
Read: It’s your fault.
I don’t need you to have a firm grasp on what it’s like to live with a chronic disease. If anything, I just need you to understand that you can’t understand my lived experience. I need you to be OK with the fact that you’re not going to be able to “fix” me or have all the answers. I need you to accept that I will always, to some degree, be dealing with my chronic diseases.
This doesn’t mean they define me. They don’t. But they are a part of me and I have to accommodate them.
I went live on Facebook yesterday to talk about all the unsolicited advice people feel the need to give when they find out you’re dealing with chronic health issues. It is one of the main reasons I didn’t want to speak publicly about my health conditions for a long time.
If you’ve been following my story, you know that aside from my endometriosis, my other issues are currently undiagnosed. We’re treating symptoms as my doctors and I continue seeking a diagnosis.
Here’s the thing…
I am a believer in both Western and homeopathic medicine. I absolutely believe there’s a place for all of it. There’s a reason medication exists and it’s not just to line the pockets of the 1 percent. Trust me, I have a massive issue with the way the pharmaceutical industry works. But these meds were created for a reason and when they’re used properly, they work.
I also believe in the power of nature, plants, herbs, bodywork, etc. I believe that when Western and homeopathic medicine come together, you can have a real shot at finding treatments that help you keep your medical conditions under control.
In order for this to happen, you have to know what the problem is.
Telling someone a series of herbs or oils or a specific diet will solve all their health problems when they don’t even have a diagnosis is dangerous and frankly negligent. Any type of treatment, whether it comes from nature or a lab has the power to do damage if it’s treating the wrong thing. Hell, making the wrong diet changes can cause more harm than good. There are actually people, with very real health conditions, that certain vegetables can cause mass destruction. So yeah, go tell them they just need to eat more leafy green vegetables and watch what happens. It ain’t pretty.
I started having symptoms of endometriosis when I was around 13. I didn’t get diagnosed until I was 20. There is no cure for endometriosis. I’ve tried loads of treatments over the years. I’ve manipulated my diet based on various reports done on what “might” help.
Spoiler alert: I still have endometriosis. I still have flare-ups every single month.
I’ve been exclusively gluten-free since February, in hopes that it might help stop whatever is causing my incessant headaches.
Spoiler alert: I’m still having headaches.
So if you have no actual medical training and no ability to diagnose a disease, stop going around telling people you can “cure” them. Stop acting like you have all the answers. I know you believe you’ve found the answers because you found what works for you but, I hate to break it to you — just because it works for you, doesn’t mean it works for everyone.
We all have different make-ups. My body chemistry is different than yours. I’ve taken by-the-book great care of myself physically my entire life — healthy diet, fitness routine, plenty of water.
I’m still dealing with chronic disease.
I don’t need you to tell me about whatever magical “cure” you believe you have. The reason I’m undiagnosed is not because nothing is actually wrong. I’m undiagnosed because there are relatively few symptoms people experience in general, and thousands and thousands of diseases and genetic disorders they could potentially have.
I’m undiagnosed because we are failing as a medical system when it comes to diagnostic medicine.
I’m undiagnosed because doctors are taught in medical school to “think horses, not zebras” when they hear hoofbeats.
I’m undiagnosed because I’ve been overlooked and brushed off from the very beginning when I started experiencing symptoms, which led to important tests not being done that could’ve given us crucial information and provided me a diagnosis.
I’m not undiagnosed because my diseases aren’t real.
And I’m not going to be “cured” with your magical supplements-oils-herbs-energy-work-diet. So stop.
You need to accept the fact that not everyone’s bodies function the same. Maybe my body is doing this as a reaction to environmental toxins I’ve been exposed to my whole life — the same environmental toxins you’ve been exposed to, but I was predisposed to be more sensitive to them. It resulted in my having a chronic disease and it’s not going to magically go away.
There are countless reasons why one person has a chronic disease and another person doesn’t. But so much of what this unsolicited advice is doing boils down to victim-blaming. One way or another, it’s somehow my fault because you’re healthy and I’m not.
I think it makes healthy people feel safe to victim blame the chronically ill. If they can find reasons why we’re at fault for “still being sick,” it somehow insulates them from ever having to worry that they too could end up with their body behaving in ways they cannot control.
I know it’s a tough pill to swallow, but just because something worked for you, doesn’t mean it’s the end all be all for everyone. I recently started oil cleansing for my skincare routine. I’m kind of in love with it. Am I going to run around and tell everyone with “skin issues” they need to be doing this if they want perfect skin? No. Because my skin is not their skin and who even knows if it’ll work for them? I’m not a damn dermatologist.
Stop being so egotistical. And more than that, stop believing you’re superior to those of us who have chronic diseases. Do you even recognize your behavior as a superiority complex? Because it is. Your incessant need to insert your “cures” and “fixes” has way more to do with you than it does us.
Fully trained and experienced, highly-qualified medical doctors are struggling to figure this out and while I can often appreciate unsubstantiated confidence, this isn’t one of those times.
So I ask, nay, beg you to think before you speak. It’s one thing if someone is specifically coming to you for guidance, and another for you to insert yourself where they didn’t invite you.
Now go forth and be a better ally to your chronically ill loved ones.