An Invisible Disability – Understanding What You Can’t See
I feel like the world has this idea of what disabilities are supposed to look like. Yet, quite often, it doesn’t match what it’s really like. And having an invisible disability comes with it’s own cocktail of stigma and expectations. Personally, I often find myself examining my own disabilities through the eyes of others. But knowing that others don’t see my suffering has only served to hold me back. It’s taken me years to convince myself that whether or not I have a disability has nothing to do with what others see. What matters is how it feels and impacts your life. And while onlookers may never know the true extent of a disability or be able to dissect its complexities, they can still offer much needed support.
I’ve gone back and forth about whether or not I have a disability for years.
According to the US Social Security Administration’s documents on mental health disabilities – I have three potential disabilities – obsessive-compulsive disorder, post-traumatic stress disorder, and schizoaffective disorder. As I continue considering cutting my working hours and looking into supplemental disability benefits, I’ve discovered that I fall into the “serious and persistent” category of the mental health disability for schizoaffective disorder. At first, it was hard to believe that was the case. But the more I look at my situation from the inside – the impact on my life and work, my inability to cope with even minor change, and the unnerving symptoms and pathways my thoughts follow, the more I recognize it.
I can look objectively at the last few months. I see the additions to my medication regimen and the doubling in the number of therapy visits. Despite my best efforts to pretend otherwise, I can see that things have gotten worse and are still not under control. But these disabilities have been with me far longer than the last few years. I just wanted to pretend that it wasn’t true.
To not just the random observer, but also to people who know me well, I look fine.
Up until recently, I’ve been able to do things like go to school, work, and just generally function in society. But they’re called invisible disabilities for a reason. It’s a bit like an iceberg. Others may notice glimpses of anxiety as I go about my day. One of my coworkers recognizes it in my voice sometimes. Maybe they’ll see what they don’t realize is a reaction to a trigger or hallucination. But they don’t see what’s really below the water. And for years, I focused solely on what others could see. I thought that because I can (sort of) work, I must, even though my anxiety and symptoms have been screaming otherwise. But now the metaphorical noise has become deafening and my mind is on the verge of shattering.
But an onlooker’s view still matters to me.
I hate feeling like I’m lying about my illness even though I never have. There have been many times where I’ve stopped and wondered if I made the whole thing up simply because no one else sees it. From their viewpoint, I look fine. But I’m not. I’m struggling and suffering whether people see it or not. But I still worry that others think I’m overreacting or that I don’t need support. I worry they don’t understand why I need to stop or reduce my working hours and focus on getting well. I’m not lazy, and I’m not a failure. I’m overwhelmed by things I’m struggling to control.
Up until recently, I even worried that I would not receive any benefits because my past employers might not attest to my disability impacting my work simply because they don’t see the full extent of it. But instead, it comes back to medical records and what I look like on paper. And it’s still surprising for me to look at what I’ve been through objectively or medically rather than with an onlooker’s bias. Despite my best efforts to ignore it, I am living with very real disabilities that do greatly impact my life.
A note to the outsider:
You don’t have to see a disability for it to be there. And even if you see the iceberg, you don’t see the jagged edges going deep beneath the surface. Even if you are aware of the disability, there are many things that myself and I’m sure others still keep out of sight, even to those we love. It’s a way to protect my loved ones from seeing the worst parts of my disease. It’s also a way to shield myself from your response to those things. I don’t want pity, fear, or overreaction. I want calm, gentle support. And whether you see it or not, I need you to believe me. And I need you to see that it is going to be a long and difficult process to melt this iceberg. But be proud of me for wanting to try.
I’ve fought the term “disability” long enough. Now it’s time to tackle the disability itself. Most people will likely never understand what I am truly going through, but you don’t have to understand in order to support me. You just need to be there for me.
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