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What People With an Invisible Illness Want You to Know

When someone has a walker, a cane, a visible disorder or handicap, you get it. You probably have sympathy, patience and compassion. When you see me and others like me — people with an invisible illness or disability — I get it, it can be hard to understand.

You don’t get that my nerves are always tingling, that my back is always burning, that my bladder doesn’t work and that my level of exhaustion is not like yours. The truth is, sometimes it’s even hard for me to understand… because I don’t see it in the mirror either. Yet, it’s there. And like so many others, it impacts every day and some days more than others.

I’ve learned over the nine years living with my neurological condition called Transverse Myelitis, that acquaintances, friends, and even family can sometimes have a tough time totally getting it. “You don’t look sick,” “you look healthy!” and “you have so much energy.” — all common comments to anyone living with an invisible illness.

People Living with an Invisible Illness

This week is Invisible Disabilities Week. I talk often mine, with the goal of putting a face to someone living with a chronic invisible illness. I have a few friends who also live with an invisible illness and I think they’d agree with everything included below.

If you know someone living with an invisible illness, I think this is what they’d want you to know:

– Just because I’m talking with you and laughing does not mean I’m not in chronic pain at the same time.

– I might have the strength to run three miles today. Tomorrow, getting up just to get the kids to school will be considered a victory.

– Yup, I look young (well, young-ish!) and healthy… but as anyone who has dealt with anything invisible to others (the loss of someone, terrible news, etc), appearances aren’t everything.

– It can feel incredibly lonely to have an invisible illness, even more so if it’s a rare one no one knows about it.

– And, even if someone has an invisible illness that is more common, it doesn’t mean their body reacts the same way as someone else with the exact same condition.

– I also often push myself beyond what I should (sorry mom!), because I don’t want to admit I have this, I don’t want others to see I’m not capable, and I really want to show up and be all the things — the mom, the wife, the professional, the friend — to all the people.

– When I have to awkwardly ask to skip ahead of the bathroom line, it’s not because I want to or think I’m more important… it’s because my bladder literally will empty in front of you if I don’t.

– Most times I don’t ask for help — even when I should — because I’ve seen people judge me with their glares and worse, with hateful words, when I’ve taken a handicap spot or asked for an accommodation.

-Canceling plans if something I never want to do. I know I looked healthy and full of energy just a few hours ago but my body honestly just feels done.

– I am also so grateful when you continue to include and invite me.

– And, your hugs and simply saying, “I’m here for you,” or “how can I support you,” mean more than you know.

– I prioritize my health and wellness because if I don’t, I will be forced to make time for my illness. I’ve learned this the hard way.

– I’ve also learned I’m a warrior, a fighter, so much stronger than I ever realized, and I know what it means to show up each day.

It’s really hard to fully understand how someone can look really healthy and happy on the outside and yet their body is at war with them on the inside. You reading this makes a difference.

I want you to know how grateful I am for those who are compassionate, kind and understanding. Because before I had an invisible illness, if I’m being totally honest, I likely wasn’t as compassionate, kind, patient and understanding as I could have been. And this, this is the greatest gift my illness have ever given me. I’m a better person because of it.

Do you know any people living with an invisible illness? Share in a comment below.

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  • Reply
    Patricia A
    October 20, 2020 at 5:48 AM

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  • Reply
    Helen Forrest
    September 13, 2020 at 9:50 AM

    Hi Alyson.. I also have Transverse Myalitus, and have had it since Jan 6, 2014 . I got it from a bad flu shot . I also had the messed up bladder ! I have never read anything that explained it so well !! Thank you for writing it !

  • Reply
    November 3, 2019 at 9:53 PM

    Thank you for this post. I have RA, and its exactly how I feel (minus of course the bladder part). I think its especially hard for people to understand that I can’t always move the way I want to, that yes, I do have to take the stairs that slowly and I hear “But you’re so young!” all the time. As much as it has been a complete challenge to readjust my lifestyle, I think it has helped me slow down quite a bit and be more intentional in prioritizing what’s important.

  • Reply
    Lynn T
    October 18, 2019 at 7:17 AM

    If anyone understands this it’s me! I’ve been living w chronic neuropathy for 25 years however with medication and the climate in Fl vs NJ plus pacing myself(which sometimes I don’t) I can do most everything.
    I worked at a college for all of this time and nobody would thing I had anything wrong.. My students were those w disabilities do a few w the same as me could support each other…,
    I’m retired now but took on a pt retail job in a boutique and love it! Standing is hard at times but I try to wear comfy shoes and take breaks as I can.
    I try not to let it control me but sometimes it does…. I know tingling ! burning and neurological pain all too well…..
    You compensate where you can and modify activities too…. Yoga is a wonderful outlet and calms the system down as well…
    Take care and know you are definitely not alone.

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