5 Aspects of Chronic Illness I Hide From the World Every Day

The thing that is frustrating about invisible illnesses is just that – they are invisible. As of right now, I don’t use a wheelchair or crutches and you cannot see the integrity of my heart. The braces I’m wearing are easy to hide underneath clothing. Now sometimes, after an acute injury, I cannot hide or pretend I’m normal because I’m in a cast or something visible. It’s a blessing, because I can hide my illness, and a curse, because people tend not to believe what they cannot see.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

On a daily basis, I’m hiding these things from my classmates and those around me:

1. Pain

I’m always in an incredible amount of pain. I don’t even put a number on it anymore. My joints are so bad they are talking about replacing my joints at age 26. Ehlers-Danlos syndrome is a chronic pain condition. My pain isn’t going anywhere and nothing makes it go away completely. When I tell you something hurts, please believe me because my pain tolerance is high. If I’m telling you it hurts, it’s probably pretty bad.

2. Fatigue

I’m always tired, whether I sleep three hours or 16 hours. My condition wears me out. Sometimes I can’t sleep because it hurts too bad. Sometimes I sleep just fine, but it wasn’t quality sleep, so I wake up just as tired. The only time I’ve woken up truly rested is after anesthesia. I don’t think that is safe to do every night though. If you want to do something after 7 p.m., I need to save all my energy to be able to do that. My body also requires more energy to do the simplest tasks. Sometimes I have to weigh what is more important – showering or doing my homework – because I don’t have enough energy to do both.

3. Loneliness

Being ill is incredibly isolating. I can’t do things other people my age are doing, and a lot of times because they don’t see my illness they don’t understand why. I can’t drink alcohol because my stomach sucks and I’m missing part of a kidney. I’d love nothing more to toss some back after a tough day, but I can’t, so I usually end up by myself. I’m getting really good at being alone, but I hate that it has to be that way.

4. Stigma

Most people don’t think this is a problem because my illness is invisible. I believe that is even more stigmatizing though. If I show up in a brace one day but look fine the next, I get accused of “faking it” or “attention-seeking,” when in reality I probably just did something silly to pop that joint out that day and needed to compress it for a while. The amount of judgment I get is phenomenal and it’s really nobody’s business but me and my doctor’s.

5. Anxiety

There is always a cloud of worry around you when you are sick. I constantly have to be evaluating my body and deciding what is normal for me and what is weird and possibly an emergency. I will tell you I’m alright most of the time, but chances are I’m not as I appear.

Appearances can be deceiving. I’m well aware I am far from normal. I’m really good at hiding all of these things in an effort to be normal. I wish I was comfortable being more open about it, but in today’s society when anything can make you feel “less than” or small, I tend to err on the side of hiding.

If the world was a more accepting place of people’s differences and was willing to learn from them instead of judging them, maybe I’d be OK with visibly wearing all three braces I’m supposed to and occasionally using the disability tag I have. I’m probably doing more damage to my body by caring more about hiding than by doing what I’m supposed to be doing. Right now though, I’m not sure I’m ready to bare it all for the world to see. I like to think I’m a courageous person – heck, I’m writing this article – but only because I’m certain I’m not the only one with an invisible illness who feels the need to hide. Maybe if we band together and support each other we can help each other come out of hiding.

Thinkstock photo via Koldunov.