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7 Things People with an Invisible Illness Want You to Know

Having an invisible, chronic illness is difficult. Honestly, that’s putting it mildly. The truth is, it SUCKS. Being sick is hard enough, but when you have an invisible illness, it’s even harder because no one can tell you are sick. People can’t understand what you’re going through because they can’t see it.

I was diagnosed with Rheumatoid Arthritis and Endometriosis in my early 20s. And I have a gluten sensitivity (but not celiac) and IBS (that one is self-diagnosed, technically). I crudely joke that I collect these invisible illnesses that won’t kill me. They just make living life difficult to enjoy sometimes.

People who are close to me know I have most of those invisible illnesses. But even some of those closest to me don’t know about all of them. Or they forget that I have them. And others outside my inner circle definitely don’t know. It’s not something I typically talk about. Let’s face it, no one wants to hear about it. And, more importantly, I get tired of talking about it.

Here’s the thing…having an invisible illness (or several) is draining. Physically and emotionally. It limits one’s ability to participate in and enjoy life. Having to talk about it just makes it worse. But there are things I wish people knew about how my invisible illness(es) affect me and I know others feel the same. So, I collected some input from other women who suffer from various invisible illnesses and these are the things they wish you all would know.

Having an Invisible Illness Creates a Whole Different Kind of Tired

The fatigue is real and very different from, “Oh, I’m tired today.” It feels like you’re literally dragging yourself around. Bone sucking exhaustion.

I’m tired. Not the kind of tired after I’ve had a long day, but just absolutely exhausted. Sometimes just breathing or eating takes effort.

I wake up feeling like I didn’t sleep. It’s like waking up to having 20% battery life instead of the 100% I should have.

Even if you find helpful ways to intervene, this kind of tiredness never quite goes away. If a hearing impairment is part of your illness, you could head to a hearing aid store and get some aids fitted to help stabilize your hearing levels. However, you still need energy for all the other things (like speech comprehension) you must handle all day long.

It’s Hard to be Productive with an Invisible Illness

Sometimes I need a day to recover from my bad days. I feel guilty for not being productive on my first good day after a bad spell, but I need that time to recuperate from the bad days.

I want so badly to be productive. I want more than anything to be running around with my kids. I do not choose to lay around instead. Sometimes it takes every ounce of energy I have to get up and take care of my kids. I hardly take care of myself.

We Aren’t Being Anti-Social

If I have to go to a social event, I can feel like I have the flu afterwards and may need quite a bit of sleep to recover.

Invisible illnesses can be really unpredictable. I often make plans at the beginning of the week and by Friday by body wants to go into a ball.

I may be able to do something today, but tomorrow I may not. I never know in advance.

Invisible illnesses take away more than the average person knows. I have to decide if I can attend a family function and it restricts the activities I can do with my kids and in everyday life.

Having an Invisible Illness is Frustrating on Many Levels

Just because I’ve lived my entire life with a condition doesn’t mean I know how or am able to keep it under control.

Medications work sometimes. And sometimes they don’t. Sometimes they stop working. Sometimes the dose needs to be changed to maintain the same control over the illness. It’s constantly changing.

I never know what’s going on with my body. New symptoms pop up or medications just stop being effective sometimes.

There are no cures for chronic invisible illnesses. There are band aids but nothing works 100%.

The emotional toll can be hard. I feel like a prisoner serving a life sentence in my own body.

Sometimes even doctors don’t understand your invisible illness (or believe you) and they pass you around from one to the next.

It’s Really Tiring Explaining an Invisible Illness to Others

Just because I’m not talking about it, doesn’t mean I’m better. I just don’t want to talk about it all the time. It doesn’t just go away.

I am honestly sick of explaining myself. My heart and mind want to do so much, but my body makes me stop.

My diet isn’t a fad. It’s the difference between being able to walk or not.

Just Because You Can’t See it, Doesn’t Mean I’m not Sick or in Pain

Handicapped parking is not just for visible handicaps. Just because I’m not in a wheelchair or using a walker doesn’t mean I’m not sick.

The one thing I find frustrating is when people say “You don’t look sick.” There are times I can barely walk or perform personal basic activities. It’s not helpful to hear that I don’t look sick.

People assume I must be lazy.

Looking “normal” and needing to explain why I can’t do something is suuuuuper annoying.

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Trista Gangestad

Originally from Florida, Trista Gangestad and her family moved to CO ten years ago and live on a small hobby farm with a beautiful view of the Rocky Mountains. She and her husband have 2 daughters, the oldest of which was born with Trisomy 18, a chromosome disorder. Trista has a Bachelor’s Degree in Public Relations from the University of Florida (Go Gators!) and worked in Communications and Event Planning for more than 10 years before becoming a mom. During the pandemic, Trista discovered a need for clean burning candles that don’t emit soot or chemicals into our homes. She formed Clever Cow Candle Co. in 2021 and makes hand poured, 100% soy wax candles with clever, inspiring and sometimes sarcastic designs on the containers. Check out her candles at When this busy mom has time for herself, she enjoys sewing, crafting, shopping, drinking “candy coffee,” and watching guilty pleasure TV shows.

This Post Has 2 Comments

  1. Wendy Egli

    This is 100% spot on.

  2. Bobbie Jo

    I have rheumatoid arthritis for 17 years and my adult children who are married with there own family tell me it’s easier for me to visit my grandchildren ( 1 -2 hours away from were I live )
    I’ve been disabled 11 yeas from ra and lung and ra attacking my spine .
    They tell me I don’t have much of a relationship with my grandchildren bc I don’t go visit bc its easier for me.
    They don’t call or message to ask how I’m doing or do I need anything. I explained before they have so little time with me and they should come visit. They refuse. So I don’t know what to do and nobody writes about these problems. I sure wish someone would write something about family.

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