I didn’t think quite much about invisible disabilities — or how much of an impact one would have on my daily life — until I was diagnosed with one. Like many invisible illnesses, rheumatoid arthritis comes with a number of misconceptions behind it. Rheumatoid arthritis is often thought to be for the elderly or “just joint pain.” But I was 29 when I was diagnosed with RA. I was experiencing far more than just pain in my joints.
I also didn’t know just how frustrating it can be to live with an invisible disability until I experienced it.
What Is an Invisible Illness?
Simply put: 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 play with their children or drive carpool. They don’t look too sick to go grocery 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 handicap spot.
Shall I keep going?
Aside from the frustrations — and there are many — of dealing with the symptoms and treatments of an invisible disability like RA, one of the worst parts is the lack of understanding from others.
A Steady Stream of Judgment
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.
You might not be able to see our pain — physical and mental — but we sure can feel it.
Just because the symbol for disability parking or bathroom shows someone with a wheelchair doesn’t mean that spot is only for a disabled person with a wheelchair or walking device. A lot of people who are in wheelchairs or need a cane have been living with their illnesses far longer than their need for a mobility device. Their disability could have started off invisible too.
It is, frankly, 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 rheumatoid arthritis is very real, questions like these can still make me doubt myself, even nearly five years after being diagnosed.
Imposter syndrome can have some serious negative effects on someone an invisible illness. When others assume it’s all in your head because they can’t see it, it can make us question if that really is the truth.
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. “It’s just arthritis; it’s just joint pain,” 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? Rheumatoid arthritis can have serious — and even life-threatening —consequences when left untreated. So do many other invisible illnesses.
Fatigue: The Most Invisible Symptom
When living with chronic fatigue, 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 was first diagnosed with RA 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. There are days I may not be able to carry something on the heavier side across a big parking lot without pain or triggering a flare. This is my reality. This is my truth.
I know with my chronic fatigue I have to balance very limited energy and cut corners. Those corners might look like I am someone perfectly healthy parking in a disabled spot, 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. Oh — and I got the parking pass because I meet the medical requirements for one. It’s signed by my doctor.
Often on public transit I find myself wishing others were more mindful of those around them before bumping or pushing their way. Some days my balance is off or my pain levels are soaring. You wouldn’t push an old lady without saying sorry, would you? Well, inside I feel 87 even though on the outside I look like a healthy woman in her thirties.
Don’t Judge a Book
Granted, the average stranger on the street does not know I have RA. That’s fine. But once you know I have it, 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.
You should never judge a book by its cover, so why judge someone’s illness by whether or not you can see it? Let’s not let the visibility of a disability dictate its severity.
Not Sure What’s Causing Your Pain?
Check out PainSpot, our pain locator tool. Answer a few simple questions about what hurts and discover possible conditions that could be causing it. Start your PainSpot quiz.