When someone breaks their arm, they can easily look down and see that it’s broken. Reassurance that the pain and discomfort they are feeling isn’t just in their head is constantly there if they just look at their mangled limb. Yep, there’s my cast. I saw the X-Ray, my arm is in really bad shape. My boss will understand that I can’t lift objects today. My friends will understand that I can’t go bowling for a while. Nobody questions it, it’s clear what the problem is and easily proven.
When you are living with a chronic invisible illness, you don’t have the luxury of visible proof to validate your symptoms, which are often times vague and hard to grasp. As I’m writing this article, I’m dealing with a wave of weakness in my limbs and fatigue that simply doesn’t make sense after just waking up a few hours ago from a reasonably good night of sleep. Sitting here trying to power through the dizzying sensation of vertigo coupled with the lack of strength in my body, I caught myself in an all too familiar pattern of thought:
Is this the result of my many hormonal deficiencies courtesy of my panhypopituitarism, or is this just a manifestation of my anxiety disorder? I don’t feel anxious, but maybe I am and I just can’t figure out why. That’s what Generalized Anxiety Disorder does, after all… and if it IS just anxiety, then it means this is just in my head and I’m only holding myself back, right? I should just be able to get a grip and feel better then… right?
Not being able to differentiate between symptoms caused by my physical health condition and the very same vague symptoms that can arise as manifestations of my anxiety disorder can be distressing, mainly because societal norms dictate that mental health is less valid than physical health, which is misguided thinking that needs to change (and a whole other rant entirely). Despite knowing how unfair and cruel that judgement is, I can’t help but notice those thoughts encroaching, making me feel like I need to justify my situation, even to myself. While grappling with the internal argument arising from my inability to determine what disorder is causing what symptoms, I inevitably turn to another conclusion which I see commonly throughout the chronic illness community:
If I can’t see what is causing my symptoms, physical or emotional, are they even real at all? Am I really even sick?
Of course I know that the myriad of lab tests I have had done over the years has definitively proven that I do indeed have the health conditions which cause these symptoms I experience, and I acknowledge that having a diagnosis gives me the privilege of validation that many living with as of yet undiagnosed chronic health conditions don’t have. Even with this medical history to back up my claims and validate my situation, I still manage to question myself, and accuse myself of being confused or incorrect when faced with these very real symptoms. I often catch myself with the admittedly irrational thought that maybe I’m just a hypochondriac.
Maybe I’m just so afraid of being found out as a fake that I have bought these debilitating symptoms onto myself in hopes that they might be noticed by others and thus validating my claim that I’m sick, even though I am obviously just faking it. Mind over matter, right?
Even though I know these thoughts are incorrect and cruel, they still arise from time to time, which makes some sort of sense considering the fact that these symptoms are invisible, as are my diagnoses, without the help of a blood test or MRI. People like to have tangible proof at their fingertips. It’s reassuring, validating. Without that proof, we question things, which is actually a really helpful survival instinct in a world of Nigerian princes and constantly expiring car warranties, but when that instinct to err on the side of distrust turns into gaslighting ourselves, it becomes destructive, and we need to stay vigilant and nip those thoughts in the bud before they can harm us.
It can be hard to avoid those thoughts, especially if you’re lucky enough to have one of those good days when your body feels almost “normal” for a little while. When you’re able to go out and enjoy yourself, maybe even do something physically demanding which is usually so far out of your grasp that it seems impossible. The majority of “normally” healthy people don’t understand the concept that chronic illness doesn’t fit neatly into the category of debilitating or not debilitating. More often than not, those of us living with a chronic illness experience highs and lows which are unpredictable, and difficult to prove when flare-ups arise. The anxiety of facing judgement from people who don’t understand this concept is what leads to this tendency to gaslight ourselves. Simply put, the ignorance of others is the fuel for our gaslighting.
So, in order to stop this self-destructive gaslighting tendency, I think it’s high time all of us just stopped craving validation from others entirely. The fact is, these symptoms are effecting us in one way or another. We don’t have any quick tangible way of providing proof to satisfy those who would question us anyway. All we can do is state our truths, and focus on how we are going to manage these symptoms instead of wasting our energy trying to validate them.
Easier said than done? Hell yeah it is, and the fact is, I might never completely stop these thoughts from happening. I’m not a robot, I can’t just rewrite some broken code and make it work the way I want it to. That’s okay. The important thing is that we recognize these thoughts when they happen, acknowledge them, and let them go without judging ourselves. This is actually a meditation technique I picked up somewhere along the line researching Buddhism and practicing yoga, and I think it’s perfect for managing thoughts like these in our daily lives as well.
Stay strong, and just remember that you don’t owe anyone an explanation when it comes to the reality of how you feel. Ever.
My name is Sunshine Ammerman. I’m a chronic illness warrior advocating for awareness of rare disorders and invisible disabilities / chronic illnesses. I used to write articles for The Mighty, but I stopped supporting them after they started exploiting their volunteer writers for profit. You can read more about that here.