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Why It's So Exhausting to Have Invisible Illnesses

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I have a disability sticker but I don’t “look” ill. This causes confusion for many onlookers. They think I have nothing wrong with me. I get judged. But I do have a chronic illness entitling me to a disability sticker – it’s just that there are few visible signs.

I have severe, chronic asthma. I have Hashimoto’s disease and I have type 2 diabetes. I also have depression. You can’t see any of these illnesses. Each one of of them happens on the inside.

A young man said to me today, as we were both having IV treatments, “Gee, you look so well.” Well, I was totally exhausted! But this exhaustion doesn’t show on the outside either.

All these diseases/illnesses I have are chronic. All of then can cause me physical and emotional symptoms. But rarely can anyone else see these effects.

Being chronically ill with invisible signs can add to the stress that illness brings with it. It’s as if you aren’t believed. There’s an attitude of “if it’s invisible, then it isn’t real.” No one can see when my diabetes causes my vision to be blurry and my hands and legs to shake; you don’t see the exhaustion that the diabetes, Hashimoto’s and asthma cause. You don’t see my internal struggle with depression and negative self-talk.

You might see that I am struggling to walk and see my shortness of breath. But you don’t see the underlying reasons. The reasons for my struggles are these invisible chronic illnesses.

So I go through my daily life looking “normal” and carrying the load that comes with chronic illness. Many chronic illnesses are like this, in that they can’t be seen. But nearly all chronic illnesses have some things in common.

1. They are very, very complex. Getting your head around triggers, treatments and dealing with all the different health professionals takes its toll. You almost need a medical degree yourself to juggle all the factors involved in your illness. But you have to get a handle on it because it is you who has to manage the illness every single day.

2. There are all sorts of risks associated with these illnesses, e.g. air quality is a risk for me. If I walk past a smoker, I start coughing and wheezing; dusty roadwork on the highway can trigger a massive asthma attack. Each type of illness brings its own peculiar risks.

3. They can have long periods when they are not very active. But, this doesn’t always apply. With any type of diabetes it needs to be monitored all day every day. And this can be trying. You have to monitor your blood glucose, how much water you drink, when and how you exercise and when and what you eat.

4. They can result in impairment of your ability to function. Definitely a problem with asthma – some days all I can do is sit in a chair. The thyroid problems can leave me so exhausted that getting out of bed is an effort. Social life can be impacted too. Sometimes it’s like, “What social life?” Diabetes can make it impossible to drive at times.

5. They are long illnesses. They really never end! Sometimes an illness can be reversed, e.g. diabetes type 2. Sometimes my asthma goes into a lull when, after Ventolin, I actually reach the “OK zone” with my peak flow, meaning I can do things without having to be so cautious.

So many chronic illnesses are invisible to the outsider who is looking at us. But they are so very real to those of us living with them. We have to constantly juggle many balls at the same time. No wonder exhaustion is such a large part of chronic illness.

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Thinkstock photo via Goodshoot.

Originally published: June 7, 2017
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