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.

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.

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.

_{The opinions expressed in this article are solely those of the writer and do not necessarily represent those of The We Spot, its employees, sponsors, or affiliates.}