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The Side Effects of Chronic Illness No One Talks About

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Everyone wants to look their very best at all times, right? For those with chronic illnesses, simply getting out of bed can be a monumental task, let alone looking “good.” Chronic illnesses take a huge toll on our bodies physically, mentally and emotionally. Over the years, I’ve experienced a few things that absolutely drive me crazy about my body. I’ve learned there’s not much I can do, so I might as well at least try not to be overly concerned about my appearance.

A common problem many chronic illness warriors have is excessive weight loss or weight gain. Medications like steroids are notorious for causing significant weight gain. When combined with the reduced ability to engage in physical activity, it is very easy for the weight to climb up. On the other hand, frequent gastrointestinal issues from any number of causes can cause dramatic, excessive and completely inadvertent weight loss. Sometimes it gets so critical that a feeding tube is necessary to attempt to prevent malnutrition. I’ve been on both sides of the spectrum within the last year alone and it drives me crazy when people talk about my weight, regardless of whether it’s good or not. Either way, I’m not going to weigh the same in three months.

I’ve never been one to obsess about my appearance, but I recently started losing my hair a lot! Fistfuls after fistfuls of hair leave my head every time I brush my hair, wash my hair… do anything to my hair basically! Of course it’s normal for some hair to break or fall out, but this is too much. I have always had baby fine hair and it’s usually not a problem, except when the remaining hair is really thin. I recently made the difficult decision to have my long hair cut short in hopes that it would stop falling out so much. Well, it helped a little, but it still comes out in bunches. Hopefully, my special shampoo and the biotin I’ve been taking will help soon. This is a very common problem as a result of the medical conditions themselves, malnutrition, vitamin deficiencies and medications, to name a few.

Everyone seems to be afraid of scars. But why? They are like little pictures that tell a story and no two scars are alike. Scars from IVs line my hands, wrists, and arms, but they are a symbols of all the ketamine infusions, blood tests, contrast for CT scans, and plain old IVs for hydration and medication administration in the ER. My back is littered with scars from hundreds of trigger point injections, countless epidurals, and a bunch of surgical scars. My fingers and hands have multiple scars, two from surgeries and one from accidentally slicing my finger open on the Operation game when I was 4 (ironic, right?). I have a surgical scar on my chest from my port placement. Even though no one can really see them, I have one scar behind each of my ears from my cochlear implant surgeries and so many more. This same kind of story is very common among chronic illness warriors. I’m proud of my scars because they tell a story, and I hope you are, too. Sometimes the scars you can’t see are the very ones that change us the most.

One of the least visible effects of many chronic illnesses is the mental illnesses that develop as a direct result of being sick. It is super important to remember this. Depression and anxiety often arise from the strain and loneliness of chronic illness. Post-traumatic stress may result from bad experiences with physicians, near-death experiences, and poor hospital stays. Eating disorders may result because of a need for control over a body where control is hard to come by. This is by no means a comprehensive list, but these are a few of the most common mental illnesses that may result from dealing with chronic illness.

There are some very intelligent people with chronic illnesses who when dealing with “brain fog” are incapable of doing certain things like carrying out a conversation or doing a simple math calculation. This symptom can be very annoying and is not necessarily treatable. It is unfortunate that it can make some of the smartest of people seem uneducated. Don’t ask me to read out loud when my brain fog is bad, because it is not pretty and I feel foolish.

The more obvious physical, emotional, and mental changes in individuals who are chronically ill are often very hard to deal with. That is why it is so imperative to be careful about the way compliments are given and refrain from commenting on weight, as some well-intentioned compliments can actually be quite offensive. As long as you love people with chronic illnesses for who they are inside, you will be on the right path!

Originally published: September 29, 2016
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