
Hereâs what I need people who donât have a chronic illness to understand: Just because your body functions properly and you are âhealthyâ doesnât mean youâre doing something better than me. It doesnât mean youâve cracked some code that I havenât.
It has taken me a long time to understand this, and why wouldnât it? We live in a culture that is obsessed with finding the secrets to optimal health and wellness. If you donât fit within the parameters of âwhat worksâ itâs often assumed youâre clearly doing something wrong.
Read: Itâs your fault.
I donât need you to have a firm grasp on what itâs like to live with a chronic disease. If anything, I just need you to understand that you canât understand my lived experience. I need you to be OK with the fact that youâre not going to be able to âfixâ 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 doesnât mean they define me. They donât. 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 youâre dealing with chronic health issues. It is one of the main reasons I didnât want to speak publicly about my health conditions for a long time.
If youâve been following my story, you know that aside from my endometriosis, my other issues are currently undiagnosed. Weâre treating symptoms as my doctors and I continue seeking a diagnosis.
Hereâs the thingâ¦
I am a believer in both Western and homeopathic medicine. I absolutely believe thereâs a place for all of it. Thereâs a reason medication exists and itâs 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 theyâre 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.
Howeverâ¦
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 donât 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 itâs 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 ainât pretty.
I started having symptoms of endometriosis when I was around 13. I didnât get diagnosed until I was 20. There is no cure for endometriosis. Iâve tried loads of treatments over the years. Iâve manipulated my diet based on various reports done on what âmightâ help.
Spoiler alert: I still have endometriosis. I still have flare-ups every single month.
Iâve been exclusively gluten-free since February, in hopes that it might help stop whatever is causing my incessant headaches.
Spoiler alert: Iâm still having headaches.
Gluten-free diets are a cure for one thing â celiac disease. Stop telling people they need to be gluten-free.
So if you have no actual medical training and no ability to diagnose a disease, stop going around telling people you can âcureâ them. Stop acting like you have all the answers. I know you believe youâve found the answers because you found what works for you but, I hate to break it to you â just because it works for you, doesnât mean it works for everyone.
We all have different make-ups. My body chemistry is different than yours. Iâve taken by-the-book great care of myself physically my entire life â healthy diet, fitness routine, plenty of water.
Iâm still dealing with chronic disease.
I donât need you to tell me about whatever magical âcureâ you believe you have. The reason Iâm undiagnosed is not because nothing is actually wrong. Iâm undiagnosed because there are relatively few symptoms people experience in general, and thousands and thousands of diseases and genetic disorders they could potentially have.
Iâm undiagnosed because we are failing as a medical system when it comes to diagnostic medicine.
Iâm undiagnosed because doctors are taught in medical school to âthink horses, not zebrasâ when they hear hoofbeats.
Iâm undiagnosed because Iâve been overlooked and brushed off from the very beginning when I started experiencing symptoms, which led to important tests not being done that couldâve given us crucial information and provided me a diagnosis.
Iâm not undiagnosed because my diseases arenât real.
And Iâm not going to be âcuredâ with your magical supplements-oils-herbs-energy-work-diet. So stop.
You need to accept the fact that not everyoneâs bodies function the same. Maybe my body is doing this as a reaction to environmental toxins Iâve been exposed to my whole life â the same environmental toxins youâve been exposed to, but I was predisposed to be more sensitive to them. It resulted in my having a chronic disease and itâs not going to magically go away.
There are countless reasons why one person has a chronic disease and another person doesnât. But so much of what this unsolicited advice is doing boils down to victim-blaming. One way or another, itâs somehow my fault because youâre healthy and Iâm not.
I think it makes healthy people feel safe to victim blame the chronically ill. If they can find reasons why weâre at fault for âstill being sick,â 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 itâs a tough pill to swallow, but just because something worked for you, doesnât mean itâs the end all be all for everyone. I recently started oil cleansing for my skincare routine. Iâm kind of in love with it. Am I going to run around and tell everyone with âskin issuesâ they need to be doing this if they want perfect skin? No. Because my skin is not their skin and who even knows if itâll work for them? Iâm not a damn dermatologist.
Stop being so egotistical. And more than that, stop believing youâre 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 âcuresâ and âfixesâ 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 isnât one of those times.
So I ask, nay, beg you to think before you speak. Itâs one thing if someone is specifically coming to you for guidance, and another for you to insert yourself where they didnât invite you.
Now go forth and be a better ally to your chronically ill loved ones.
source https://www.programage.com/news/Why_Unsolicited_Health_Advice_Is_Often_Victim-Blaming_in_Disguise_1594059391263664.html
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