Health & ME/CFS

June 6th: Day of Visibility!

Today is the annual International Day of Visibility for people living with “invisible illness.”

Today is our day to be visible. To share our stories and help people understand, that just because you don’t look sick, it doesn’t mean you aren’t.

It’s something I think about every time we go to town or do any shopping, as I pull into a handicapped parking place. I’ve had handicapped tags on my car for over ten years now.

As I get out of the car, and walk to the store, I’m always very aware that there are people who watch those who park in handicap spots, and who are judging all the time. If you aren’t bent over with age, using a walker or wheelchair, in a cast or on crutches or have some outward sign that you deserve to be parking up front in the handicap spots, there are people who are going to get mad, or who at least are going to say to themselves or companions, “Well, she doesn’t look very handicapped to me!”

What they don’t know or understand: that I’m only there because I took a huge load of meds to get me there; that I’m not limping in pain because I took a load of very strong pain meds before we left home; that every extra step I take is expending energy that I don’t have, and will make me miserable for days to come.

What they don’t understand is the cost in suffering and pain of every outing. I wrote about this in my post, The Aftermath.

No matter how I may look on the outside, you have  no idea what is going on inside.

There are many “invisible illnesses.” Fibromyalgia, CFS, and Lyme, are just a few.

Even cancer can be an invisible illness – one friend told me of the tellers at her local bank telling her how great she looked just because she had lost weight. She had lost so much weight because she was battling cancer.

Once, when I was at social services discussing my being disabled with them, one of the ladies said to me that it was hard to believe someone was too disabled to work when she saw them putting a gallon of milk in their cart at the grocery store, despite having a doctor’s statement that they shouldn’t lift more than five pounds. She wasn’t talking about me, but the point was well made. I can’t lift more than ten pounds repeatedly, which is what the form is really asking – can a person do it in a work setting. But can I put a gallon of milk in the cart? Yes. Does it hurt my back to do it? Yes. Can you tell? No.

Her comment made me paranoid about getting groceries for a long time.

Just because you can’t see it, it doesn’t mean it isn’t there, or it isn’t very, very real.

Just because you can’t see the pain in a person’s eyes, doesn’t mean they don’t feel it, and they may feel it for days afterward.

Invisible illnesses can affect anyone you ever see. You can never know what someone has going on inside. We get really good at hiding it. We don’t want to look sick, or act sick. We do more than we should quite often, and we pay for it for days afterward, but you won’t see that.

So be kind. Don’t judge. Help people reach things in the grocery store. Offer to lift their bags into their cars for them if you have the luck to be healthy and strong.

Because you just never know. Tomorrow it could be you who has an invisible illness, who needs help.

You never know.


4 thoughts on “June 6th: Day of Visibility!”

  1. Thank you so much for this entry. Over the years I have become more and more paranoid about being ‘too well’, in case people think I’m faking a disability, to the point where I’ll isolate myself indoors on a good day just so nobody judges me. It shouldn’t have to be that way.


    1. You’re very welcome – there are so many of us out here, all experiencing the same things. It’s really comforting to know that others feel the same way, face the same difficulties, the same hard decisions. Thank you for reading my blog!


  2. Wonderful, as usual. I think that you mention one of the key things; not only are we good at hiding the pain, countless studies have proven conclusively that people who deal with chronic pain express handle pain differently than those suffering acute pain. We really are able to be at a “9 out of 10” on a pain scale, but not exhibit any of the “standard” pain markers; our heart-rates do not jump up, we do not become diaphoretic, we do not turn pale, or flush, or have difficulty thinking or speaking. If we did that every time we felt pain, we would never function. Yet, even physicians who report knowing these facts, continue to deny them in reality. Everytime I go to my GI doc-who actually is “on my side”-he still checks my pulse after palpating my ever-painful RUQ, and everytime, I feel that defensiveness rising, knowing that I have “failed” the ‘test.’


  3. Hi Ash,

    This is an excellent essay! Very easy to read. Would make a good article for your local newspaper.

    I’m very tired so I can’t say much, but thanks for the good read and validation too.

    Peace and Blessings,


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