Having a VISIBLE Invisible Illness (You read that right)


Would you rather have a visible-or invisible–illness? Megan explains why this simple question can be difficult to answer.

By Megan Fulsom

Oftentimes, when people find out that I’m chronically ill I get asked the question “Would I rather have a visible or invisible disability?”

It’s such a hard question because there are “advantages” and “disadvantages” of each. Plus, I’ve never been on both sides of the coin before. How was I supposed to know if I would prefer having a visible disability if I didn’t know what it was like?

Well, now I kind of know. I have what I’m calling a visible invisible disability. How can I have a visible invisible disability, you may ask? Easy. Sometimes my illness is visible and sometimes it’s not.

I have several different chronic illnesses and until about three weeks ago they were all invisible–until I was passed out on the floor. Thanks, dysautonomia.

Invisible illness rarely show our struggles

It’s always been so frustrating to explain to people how I could look like a perfectly healthy 20-something female and yet be so sick at the same time. On the outside I’m the picture of health. On the inside my body is at war with itself 24/7 and no one can see that part, or understand it, but me.

And then they could . . .

Things started becoming more visible in my invisible illness world

I started using a wheelchair recently, especially when I’m at school, to help with the extra weight of my book bag which prevents me from passing out as much. I can no longer stand for more than ten minutes–and that’s on a really good day. I also the wheelchair it to counteract the pain from my fibromyalgia and EDS.

Let me tell ya what though, having a visible illness is very different than having an invisible illness. You are more noticeable. People start offering to do things for you that you can do yourself even in your wheelchair, but they feel sorry for you.

What does a visible invisible illness feel like?

How does it feel to be someone with a visible invisible illness? Weird, that’s how.

I use my wheelchair to get into school and class because I have my book bag. Then I walk to the bathroom. I see the same people both times and so I need to explain that I just need to use it for certain things because I have a condition that causes me to pass out sometimes.

And they just stare.

. . . And it’s awkward.

. . . . . . So I turn around and scurry back to class.

And then there is the parking spot.

I feel like I have to explain why some days I do not have to use a handicap parking space and some days I do. Some days my pain is less and some days it’s pretty high, but you can’t see it either way.

Lately, my tiredness and fatigue is showing up on my face. I have had multiple people tell me the past two weeks that I look tired. While part of me is excited that I’m finally starting to look as sick as I feel, I’m not excited that so many people are noticing the part that does not flatter me.

Every day is different

Anyway you cut it, having any type of illness visible or invisible is a journey every day. Either provides perspective for being grateful for the small things.

But I think that being able to live in the realm of having a visible invisible illness gives you the best perspective. You know both sides of the story, how to accept anyone for themselves their uniqueness.

Therefore, having a visible invisible illness seems like an amazing thing to me, so if that’s you, embrace yourself, because you are awesome!

meganMegan Fulsom has Dysautonomia, Fibromyalgia, EDS, Celiac, Colitis, PCOS, Endometriosis, and Thoracic Outlet Syndrome. But she is not her illness. Megan is a 20-something woman who loves God, music, the outdoors, the Carolina Tarheels, and food.

She has a Border Collie named Carolina and a cat named Cadence –both of whom she loves to cuddle with on her days in bed. She is a graduate dietetics student and will hopefully be graduating in August. Upon graduation she hopes to pursue working with those with chronic illnesses, helping them to manage their illness with their nutrition.

Megan plays bassoon in her free time to relax. She also plans to run/walk a half marathon in September 2014 to prove she can. Visit her website at http://medicalmusingsbymeg.blogspot.com

photo credit: pni via photopin cc


  1. Meredith says

    I’m in the exact same position. Can stand and walk but only for about ten minutes, use a wheelchair for certain things, cane for others… People are so static. Oh, you’re not in a wheelchair 24/7 therefore you’re not really disabled. Yeeaaah.

  2. ShannonWalker says

    I also have a visible invisible illness, and how well I know those awkward looks when I get out of my wheelchair and start to walk. I never really know what to say or do in that situation, particularly when they start asking question – even complete strangers, like I owe them an explanation. And Amen about the handicapped parking, sister!

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