Living with any type of chronic illness comes with its own unique set of problems. There’s pain, fatigue, isolation, loneliness, fear of missing out, mood swings, etc. Then, of course, there are medications, side effects, never-ending doctor appointments, doctors being jerks, and feeling like you’re constantly being judged and monitored.
As if that wasn’t bad enough, there is an insult that adds to your injury every single day:
Not being believed.
I’ve had this problem my entire life, and every single time I ask fellow spoonies what the worst part of living with a chronic illness is, it’s not being believed. Not the pain, not the missed days, not the medication side effects–it’s the complete and utter lack of validation as a human being.
If you’ve been following my posts, you know Instagram has become my new obsession because I find so much community and connection among the spoonies there.
Recently, I asked the question in the article title: What did it take for people to FINALLY believe you’re sick?
Some answers made me angry and sad, but they didn’t really surprise me. The common theme was this: The only time people seem to believe a person with an invisible illness is when their illness becomes temporarily visible.
(Answers have been edited for length, clarity, and content.)
- “People believe me when I’m using my cane.”
When a person with a chronic illness uses a mobility device such as a cane, crutches, a wheelchair, etc., they tend to be taken more seriously during that time. This is because the mobility aid acts as “evidence” to back up the claims of chronic pain.
- “They tend to take me seriously when I’m having a flare.”
Here is another incidence of the invisible becoming visible. When you’re not having a flare, you look like everybody else on the outside.
But, on a bad flare day, it’s a completely different story. You may be pale, sweaty, slow to move, have dark circles under your eyes, have difficulty concentrating, etc.
However, even this can sometimes backfire. There are several different responses you may get depending on who’s putting their two cents in.
Do these sound familiar?
- “It looks like you’re having a really rough pain day.”
- “Stop being so dramatic!”
- “Are you on drugs?”
Ugh! Can’t win.
- “It takes physical evidence for me to be believed.”
Physical evidence of an invisible illness such as bandages, a port (for infusions), a feeding tube, an ostomy, etc., are more likely to garner validation and understanding because healthy people are better able to make a connection to your illness when there is something physical in or on your body that “proves” it.
- “Believe it or not, not talking about it makes people more likely to believe me.”
This was an unexpected answer, and it really got me thinking. Some who live with chronic illness talk about it a lot. They blog about it, make videos about it, and talk regularly with their friends and family about it. Other people do anything and everything they can to hide it.
Still others are somewhere in between. They let certain physical evidence speak for itself. For example, sudden hair loss, extreme bruising, a mobility device, etc. Instead of talking about it, they wait for others to ask them what’s going on.
This seems to “make people curious and likely to believe”.
- “When I go in for operations, people take me seriously.”
For some, this is what it takes. No matter how long a person has been living with a chronic illness, an operation that leaves a person lying in a hospital bed hooked to tubes is the only time friends and family believe there’s a real problem.
- “If I unexpectedly drop a ridiculous amount of weight, suddenly, everybody cares!”
Yikes! Again, irrefutable physical evidence seems to make all the difference. One person said that when she unexpectedly dropped a full 60 pounds in two months, her friends and family called her crying because they thought she was actually dying!
- “They don’t believe me. It doesn’t matter what I do. My ex of 20 years kept telling me to get a job.” “My daughter told me fibromyalgia doesn’t exist.”
For some, this is cold, hard reality. All the medications, flares, side effects, operations, and mobility devices do absolutely nothing to convince even the closest friends and family that there is anything wrong.
This type of complete and utter invalidation can do serious damage to your mental health, thus further complicating your condition(s).
I’ve been there. I understand.
- “When I was hospitalized, people finally started taking me seriously.”
This is my story, and so many chronic illness warriors share it. I was sick from birth to age 22, and, when a naturopathic physician diagnosed me with gluten intolerance and ITP (an autoimmune clotting disorder), I thought that was the end of my struggle to be taken seriously.
It wasn’t. Apparently, those diagnoses translated to my “diagnosing myself with diseases I found on the Internet”.
The only disconnect I can think of is that I did have to do most of my research on my own, and I talked about how I’d researched my conditions online.
Also, the doctor was a ‘naturopath’, so, in their eyes, I might as well have told them that a shaman in the woods danced around a fire and diagnosed me through a vision.
It actually took me having a complete nervous breakdown in 2014 for me to FINALLY be taken seriously about ALL the conditions I’d said I’d had since the beginning.
I’m autistic, and I’ve known that for almost 10 years. (Research. It’s my thing.) I also have OCD, PTSD, a traumatic brain injury, severe gluten intolerance (probably celiac, but I never had the biopsy to confirm it), chronic shoulder spasms, and occasional esophageal spasms (that’s new).
I spent five long weeks in the hospital, and I got almost every single diagnosis I needed (and some I didn’t), and I was officially diagnosed on the autism spectrum in 2015.
So, that’s what it took for me. I had to lose my mind to gain validation. And I know I’m not the only one. It sucks. It’s horrible. It makes me resentful. But, it is what it is. I’m in therapy, I take medication, I have supports, and I try to live in the now.
That doesn’t mean I don’t still have my moments.
Those are the most common answers I’ve gotten to this question.
What about you? What did it take for you to FINALLY be believed?
Please post your story in the comments below. Let’s share and support each other! Community is important, and together, we can do so much more.