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What You Don’t Know About My Illness If You See Me on the Street

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I have basically been in pain my whole life. My body has been fighting me for as long as I can remember. And I have been fighting back.

I have days when I can’t get out of bed and days when my husband has to help me to the bathroom and back, but I always get up again.

I am one of the lucky ones. I have an incredibly supportive husband of 42 years, two grown children, a son-in-law and three grandchildren who look after me and support me through everything. I am also blessed with friends who never let me down, even though there are many times when I let them down. Many people in my position have no emotional or physical support at all.

My secret weapon is my online support group. We are a small group of people suffering under the same umbrella of diseases. We share our lives online. I feel closer to some of these people, whom I have never met, than some of the people who are in my life every day. Without this group of women (and one very brave man), I think I could sink into a terrible depression.

You see, I have what is referred to as an invisible disability. If you see me on the street, and it’s a day where I don’t need my cane, or my walker or even a wheelchair, you wouldn’t know that I am disabled. That can be a blessing and a curse all at the same time. For some reason, it seems to be very hard for people to understand something they can’t see.

If you see me at the movies with my grandchildren, or out shopping with a girlfriend, or even working in my vegetable garden, what you don’t know is I am making a choice to keep on living. I will pay the high price of increased pain and fatigue for doing these things, but I will do them until I can’t do them anymore.

More than 10 years ago, on a dark evening, I was standing beside my husband’s truck in a parking lot and I was crying. An elderly lady came up to me and asked me if I needed help. I told her I couldn’t get myself back in the truck to go home. Her husband then came over and the two of them helped me into the truck. She told me they were shocked and had no idea someone who looked like me could be in so much physical pain.

Social media these days can be rampant with stories of people who are faking it, and it can also be full of stories of people who need and deserve help, but have been judged unfairly. If I run into you in town, or you see my smiling face on Facebook, doing something fun with my family or friends, and you really want to know, then ask me. I will be happy to explain my situation. If you really listen, I think it will help you be more understanding of people with invisible disabilities. We don’t want to be treated differently, we just want to be treated fairly, and we want people to stop judging us.

If you want to hold the door open for me, or offer me your seat when you see how exhausted I look, I will be grateful. If you can try to be a little more patient at the counter, when I am struggling with my fingers and I can’t get my money out to pay for my shopping, I will be very grateful.

There are many little things you can do to make other people’s lives easier — things that won’t cost you any effort at all, but will make a huge difference to people like us, and, in the long run, can make you feel better about yourself. To me, that’s a win-win situation.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: March 23, 2016
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