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5 Struggles of Having an Invisible Illness

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What does it mean to be “invisibly ill?”

If you are invisibly ill, usually that means that people can’t tell by looking at you that you’re sick. You don’t have a broken arm, a wheelchair, an insulin pump, or any other clear indicators showing that you aren’t well. Some conditions that fall under this category are: chronic migraines, lymes disease, depression, autoimmune diseases, or postural orthostatic tachycardia syndrome (POTS).

I am currently living with POTS, which is a condition that frequently causes me to become very dizzy and faint when doing common day-to-day activities. I also have celiac disease, anemia, and temporomandibular joint dysfunction.

Being ill while still “looking fine” is something that can be lonely and difficult. Many of us with chronic illnesses are tired of the typical, “You look just fine,” “I’m sure you’ll get better soon,” or, “You’re still sick?”

Don’t get me wrong, I know that people mean well. People care and they want to do everything they can to help you, and I have experienced an overwhelming amount of support that I will always be thankful for.

But for those that may be wondering, here are some of the struggles that we often encounter:

1. Many of us have trouble talking about our illness.

To be honest, I try to avoid talking about my illness at all costs. I don’t want to be perceived as weak. Prior to being sick, I was an avid rock climber, hiker, and traveler. I’d rather be seen as the climber girl than the sick girl.

Only one or two people at my work even know that I have POTS. I work a desk job, so I am able to sit down all day doing my work, which usually is OK for me. Sometimes I just want to get my mind off of my struggles, so I don’t talk about them very much.

I usually don’t want people to feel bad for me either. Sometimes not talking about my illnesses to others does leave me feeling lonely and sad. I know that I should be more open about it, and I’m working on that.

2. Sometimes we’re embarrassed.

Just the other day, I was walking in Home Depot, and I got very dizzy and had to sit down. I have trouble going shopping sometimes because being on my feet makes me light-headed. I saw several elderly ladies walking past me, and thought, “They’re doing better than me.”

I’m 22 years old and I struggle to do things like going to the store. Because of how active I used to be, that can be embarrassing. I have a tendency to hide my struggles because it makes me feel uncomfortable to share them.

I recently got a handicap pass, which has helped me lots on really bad days. I know that some people probably look at me and think, “She’s just fine, why is she parked there?” I totally get that. I used to do the same thing! Yet, I’ve learned we should never judge because we don’t know what people are going through.

3. It can be difficult to accept help.

I am definitely stubborn. I like to do things for myself, and it can be hard to accept help when I need it. This is something that I’m getting better at. I’d much rather be on the other end… doing the helping for someone else.

But I have to remember that I would be happy to help someone in my situation, just as many are happy to help me. I am learning to humble myself and to not worry too much about what others think.

4. We feel like we’re missing out.

I think this has been the hardest part for me. When I see people doing things I love, such as hiking, climbing, or biking, I am happy for them, but it reminds me of how I used to be able to do those things without worry. It’s hard not to feel sad. I miss the freedom to be active and to be strong.

I hope and believe that I will be able to get back to these things I love in the future. And I still try even if I end up feeling too sick or faint. I guess that’s what matters, right?

5. Doctors and modern medicine have their limitations.

Even when we’re doing everything we can to feel better, sometimes it isn’t enough. For example, if you look up POTS, you will find that things like drinking more water, eating more salt, wearing compression stockings, and taking medication help alleviate symptoms.

When I was first diagnosed, I was sure that these things would all work and I’d be cured in no time. I quickly found that this was not the case. Doctors know very little about the condition and how to treat it, and so there is a lot of experimenting involved in trying to treat POTS.

I know many other conditions are similar, and it is frustrating when there is no medicine or cure for you.

Though living with a chronic illness has been very difficult, I feel I’ve grown a lot from it. I’m learning to stop caring what other people think, to fight the urge of comparing my situation to others, to not feel sorry for myself, and to focus on my health.

I do not write this article looking to complain or to find pity, but more to spread awareness to others about what it’s like to have a condition like this, and to bring hope to those that are struggling with similar trials.

I’d like to encourage you to not give up and to find joy in the small victories. Just last week, I went up into the mountains to have a campfire, and it was wonderful. I felt incredibly blessed to be able to experience nature in a way that didn’t make me feel sick. I took in the beautiful views and the fresh mountain air, and I felt happy.

Look for those little things that make you feel alive and happy. Having an invisible illness doesn’t have to be miserable.

Follow this journey on Gone to POTS.

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Originally published: September 8, 2017
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