Coming to Terms with an Invisible Disability

Disability is something that I came to know (and see) as a physical incapacity. I grew up seeing folks in my neighborhood, and even in my own family, with wheelchairs, canes, walkers. Once in a while I would see someone walking around with a service dog. I never ever imagined a disability could also be something unseen; something invisible to the naked eye. Even in the “trenches” of anxiety, when I was at my worst, I never considered myself disabled. It wasn’t until I questioned whether or not I would ever have a “normal” life again that I started to contemplate on my “status”.

Who do I tell?

I thought to myself. Is a disability something I announce now, even though I don’t have any physical indications of being disabled? Do I report it to some government agency? I did consider filing for disability at some point but the thing is, I could still work. I had been freelancing and working remotely, even prior to the Covid-19 pandemic. I could still do a lot of the work things I did in the past, with certain limitations. I just didn’t feel like I used to; I no longer felt “normal”. I hadn’t even voiced my concerns to my family until things got so bad and I was afraid to be alone, and even then, I still didn’t share my full concerns. I was living in terror and also terrified that my family would know what I was going through. I was scared it would be too much for them — it was already too much for me.

The more open I became to discussing my condition with my loved ones, the more I felt the need to explain that I was dealing with a disability, even though they could not see it.

I would tell them to imagine I had a broken leg

Or something to that effect, and therefore I couldn’t do certain things in the same way anymore, at least not until the “leg” was healed. It was the only way I could think of to explain why I no longer felt safe doing things I had at one point found mundane, such as catching a bus, visiting a friend, having people over, or even going shopping. My life had changed in such a drastic way due to a condition which, while not immediately visible, was a very real experience for me.

An Anxiety Disorder is one of the many invisible disabilities people face, and possibly even more people than you think. It’s something many of us become good at hiding, until we can’t. I had developed a panic disorder in 2019, which turned into an anxiety disorder, and then at the height of the pandemic developed into Agoraphobia. Not to mention the underlying depression I had been hiding for years prior to 2019.

I will be sharing more on my story in other posts but I needed to write this one because if you are struggling with a disability, one that maybe you never thought you’d ever have to deal with — if you’re having a hard time accepting this “new normal”, I want you to know that I understand. I’ve been there, and honestly I’m still there.

I’ve become more accepting of myself and my conditions, but I still have moments where I struggle to even voice that I am dealing with a disability. I remember when I first expressed this to some of my loved ones they immediately responded negatively — “this is temporary” they would say, or “it’s not like you can’t walk; it’s not that bad”, and some other cringe-worthy words. But I understood why. We’ve been conditioned to view disability as something to be seen on the outside — proof that someone was actually incapacitated.

It’s very hard to explain an invisible disability to someone who has never dealt with one.

I mean, sure I can walk but at some point I could barely walk outside of my house. Or how about, I would feel like I was dying while on my way to work — the best way to describe a panic attack to someone who has never experienced one is that it feels like death. It feels like the emotion of dying, while feeling physical symptoms that continuously feed thoughts of death. Picture it — you feel you can’t breathe, then you start to hyperventilate as a result, then you start to think you’re going to pass out and die, and then your heart starts beating wildly; you begin to feel faint…this is just my experience. Everyone’s experience with this kind of “death” is different.

If you don’t experience or deal with an invisible disability but know someone who does, I beg you to please take them seriously when they tell you they are unwell. You might not be able to help them directly, but sometimes it’s enough to just feel like we’re being heard.

Some things I’ve accepted since coming to terms with an invisible disability

• I only apply for remote opportunities. This is something I’ve been doing for years prior to dealing with an anxiety disorder, but especially useful while dealing with it.
• I ask for accommodations when needed, including having my camera off for meetings when I’m not feeling well. I may also ask for a later start time for work, in case I don’t feel quite “ready” in the morning. A flexible work schedule also helps me when I have medical or therapy appointments.
• I don’t do things in the way I used to. Some things because of lifestyle changes and preferences, and some other things because I don’t feel “safe” doing them. I might not be down to meet up with friends at a restaurant, for example, but I may meet up for a picnic in the park. I make accommodations for myself whenever I can.
• I lost some connections because I was no longer the person they knew — I no longer wanted to go bar hopping and I stopped drinking, and they couldn’t deal with that. That was hard at first but then those “losses” helped me receive stronger relationships; folks who accept me as I am.
• I live in a big city as if it were a small town. When I was homebound, it was a struggle to even get outside of my building. These days I am mostly “neighborhood-bound”; I mostly stay within my neighborhood but have explored it like never before. I’ve come to appreciate all the nooks and crannies of where I live, and am more attentive of the exterior changes I took for granted when my life was more about the hustle and bustle. So, I actually stop to “smell the roses”.

I understand the way I live is not a viable option for many folks.

As a Black Latina I know that my communities don’t have the same access, to remote work for example. This was a path I forged for myself a long time ago — teaching myself how to design websites at an early age. I also have a college degree, so I have more paths available to me. My heart goes out to those people dealing with invisible disabilities and having to still show up for those in-person jobs; commuting and interacting in ways that make them feel unsafe. And yes, while techniques like “exposure therapy” do work, it is not an option for everyone, and the results are not the same across the board. I can’t imagine going back to the way things were for me, and honestly after the pandemic, is anyone’s life really back to “normal”?

By the way, for reference I live in New York City. Imagine — I already felt unsafe in so many ways living here, prior to dealing an an anxiety disorder, and now it’s…it is what it is. I make the best of it with what I have.

Acceptance is the first step.

What you’re experiencing is not your forever, or maybe it is…but you don’t know about tomorrow. Point is, be here now with where you are. Ask for, seek, and be open to receive the help and support you need.

Check out my post on what to do if you’re dealing with anxiety, as well as some methods which have helped to soothe me and my nervous system.

Thank you for your love and support, and I pray for your health and well-being.