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This is my story

September is Chronic Pain Awareness Month and September 8-15, 2013 is Invisible Illness Awareness Week. Today I am asking all my friends to stand with me and wear leggings (or other non-pants) to show support in a slightly “invisible” way.

For millions of people an invisible illness is part of their daily lives. Nearly 1 in 2 Americans suffer from a chronic illness. 96% of those people have a condition that is invisible. From Celiac to Depression. From Chron’s to Complex Regional Pain Syndrome. I have friends who suffer from Lyme disease and Hashimoto’s. Friends who have crippling adrenal fatigue and life threatening food allergies. And yet, when you see photos of us all together, you would not be able to guess that any of us were sick, in pain or in an epic battle for our bodies. That is how we all want it. We want to be just like everyone else.

I have written a few times about what it means to live with Complex Regional Pain Syndromefighting for hopewhy I write about it, and the things that the disease and the treatments have taken from me.

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And although FrannyCakes is a place for revenge cookies (which are totally a thing) and cupcake therapy. It is also a place that I hope I can show you that being sick and being young isn’t the end of a full life. Just like being gluten-free isn’t a sentence to a life of bad dessert, pizza and pasta.

Every bit I share of my story, I share so maybe someone thinks before they sit in the handicapped seat on the train or park in the handicap spot. I share so that maybe someone won’t give me a sideways look when I go through the security line at the airport in a wheel chair because I can’t stand in the line. I share so the next time a server gets a request for extra care with a meal they know just how serious it is. I share because I have eaten one too many beany brownies. I share because even the most well-meaning friend doesn’t understand the toll this condition takes on my body. I share because I don’t understand it either.

frannycakes with erica from celiac and the beast

Because this is my story. The friends and the family. The triumphs, the trials and the food.

chicago concert

A girl living life. A girl who just happens to have a body with robotic parts and an aversion to wheat and shellfish. A girl on an adventure.

Please help me spread the word that an invisible illness is both very real and very much just a detail in a list of the things that make me me.

And thank you so very much for coming on this ride with me.

 

10 comments

  1. Thank you for sharing your story!
    I, too, suffer from an invisible illness: Myasthenia Gravis. Some days are good… and some are really bad. The comment “but you don’t *look* sick” I’ve heard too often. Before I finally got my diagnosis, some said I was just “being lazy”. It’s heart breaking and just like hidden diseases like Celiac, other food allergies, depression, etc. people need to learn to have more empathy and not judge. You never know what battles someone is facing on the inside.
    Thank you for raising awareness for CRPS and invisible illnesses alike. <3

  2. I also thank you for sharing your story. I have an invisible condition, as well and just as Keeley wrote, prior to diagnosis, I was accused, by doctors even, of making it up for attention. I did not know that this week was Invisible Illness Awareness Week. I guess I will finally have to sit down and write that post I’ve been meaning to write. (((HUGS))) for you!

    • maryfran says:

      Sometimes I think they still think that I am crazy, but I am not and I found the ones who believe and are willing to help! I can’t wait to read your story!

  3. Dana says:

    I just happened to come across your blog and this was the first post I saw. I am 23 and developed RSD as an infant. I have had my left ankle reconstructed twice, fixing the mechanical issues somewhat, but aggravating the chronic pain. I have had people tell me I am lying when they see I have handicapped tags on my car, siblings tell me I have made up the amount of pain I am in, and friends not understand why I cannot go out dancing.

    It sucks but thank you for writing about it. I have just finally started to be open about my struggles (instead of telling everyone my last surgery was because I broke my leg) and it is nice to see other people being open as well.

    • maryfran says:

      I lied about the pain for a long time. I made excuses to stay in and never told my friends how bad it was. But one day I decided I needed to be open and share because how misunderstood this disease is.

      I can’t imagine having had this condition my whole life, my heart goes out to you!

      Gentle hugs! And keep on sharing your story – it is the only way people become aware!

  4. Sarah says:

    Hi my name is Sarah and am 35, I was diagnosed with CRPS in my arm last year (2013) I have been told by nurses and by a particular doctor that I had made it all up, in my head, there was nothing wrong with me, but thanks to my husband and OT I was referred and received treatment via a doctor who deal with this shitty debilitating crap that we go through and I also have problems with my back and am undergoing treatment for aswell, I know my are won’t really get better

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