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  • Saskia Müller

Frustrations of Having an Invisible Disability

As a child, I didn't think much about invisible disabilities or how much of an impact they would have on my daily life. I also didn't know just how frustrating it could be to live with one until I experienced it.

What is an invisible disability? Put simply, it’s any medical condition that isn’t obvious to others.

People with invisible illnesses or disabilities may look totally fine.

They don’t look too sick to work.

They don’t look too sick to do the housework.

They don’t look too sick to go food shopping.

They don’t look like they can only get through the day with a three-hour nap.

They don’t look like they should have to park in a disability spot.

Shall I keep going?

Aside from the frustrations of dealing with the symptoms and treatments of an invisible disability, one of the worst parts is the lack of understanding from others.

We in the invisible disability community are often met with comments, judgment, or rude questions. Others think we are lazy when the truth is we are dealing with illness and all that comes with it: fatigue, medication side effects, and a roller coaster of emotions.

I can't tell you how many times people have asked me, "It's all in your head, why don't you just get over it?" I'm not sure where this idea comes from, but all I can say is that it's incredibly insensitive.

You might not be able to see our pain, physical and mental, but we sure can feel it. It's really not fair saying "it's all in youf head" just because you can't see it.

It is so exhausting having to put effort over and over again into having to prove our illness to others — especially when we are already running on empty.

Why can’t you do this? 

Why didn’t you do this? 

Why can’t you afford that while on disability? 

Why can’t you eat that?

Why could you do that yesterday but not today?

All of these questions are draining. They remind us of what chronic illness has taken away from us. Even though I know my chronic illnesses are very real, questions like these can still make me doubt myself.

It's hard to believe that something as seemingly invisible as an invisible illness can have any negative effects, but it's true. Impostor syndrome is a common issue for people with invisible illnesses, and it can make us question whether or not our illness is real.

When others assume that your illness isn't real because they can't see it, this can cause you to question if there really is anything wrong with you at all.

I know at the beginning of my diagnosis I felt like I was an imposter because I let other peoples’ words get to me when they doubted my illness because I looked fine. “Your stomach is fine, it's just your anxiety” and “it’s just growing pains, you're being dramatic” I heard from others. My body was telling me that it was so much more.

If you constantly doubt what’s wrong with you, then how are you going to properly treat it?

When living with chronic illnesses, you may not be able to handle more than a few steps at a time without extreme exhaustion kicking in or preventing you from being able to walk very far. When I first started getting knee pain, I didn’t know how to explain what was going on with me. Other people thought I was being dramatic because one day I could do something and the next day I couldn’t.

I know with my health I have to balance very limited energy and cut corners. Those corners might look like I am someone perfectly healthy going into a disabled toilet, just to spare some energy for all the other stuff I have to tackle in the day. My mind is always on energy-saving mode. No, I’m not lazy. I just don’t have the same amount of energy as someone without a chronic illness.

Granted, the average stranger on the street does not know I am disabled. That’s fine. But once you know I am, I ask for your kindness. Your empathy. Your support. Even if you don’t really “get it” at first, please: just try.

Kindness can really go a long way in someone’s day. Remember to be accommodating and accepting of the unique challenges facing someone with invisible disabilities. This helps create a more inclusive society.

I think it’s important that we start talking about this because I see so many people who are struggling with chronic illnesses or disabilities who are afraid to talk about it because they don’t want to be seen as “weak” or “lazy.” But they shouldn’t feel that way!

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