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Monday July 28th 2014

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Disease/Sleeve

Wearing My Disease On My Sleeve

This page is to be filled with images of our community wearing their Dear Thyroid T-shirts that include a blurb to a seemingly simple question, “How does it feel to wear your disease on your sleeve?” (Literally and metaphorically). Many of us struggle articulating what our disease feels like to the others, and to ourselves. That being said, as we’ve bravely come together to write Dear Thyroid Letters, etc. to our diseases, we believe this page will be overflowing with those same voices courageously sharing the many faces of thyroid diseases and cancers. In our quest to give our diseases a voice, we also want to give them a face; each is beautiful and in their own way, each says, “I’m here. I’m real. I am the face of thyroid disease and thyroid cancer.” In our collective campaign to create awareness and beget change, this is our next step. Please send your pictures to Katie@dearthyroid.com with your answer to this question “How does it feel to wear your disease on your sleeve?”

MANDA


“Wearing my disease on my sleeve is a frightening prospect, but one I feel I’m finally ready for. I am tired of hiding and pretending and trying to be what everyone else wants me to be. I haven’t exactly come out of the thyloset just yet, but my toes are poking out and I’m peeking around the corner thinking — yes, I can do this! Since diagnosis two and a half years ago, it feels as though I’ve been living by everyone else’s rules and expectations. Shutting my mouth when Doc says my numbers are normal; Pretending to be well because that is what my family want to see; Trying not to let on to my trusty sidekick that I feel unwell lest he regret being lumped with a sick chick; Wearing myself out trying to be that same girl, same mother, same friend that I was pre-hashi’s. For a long time I’ve been embarrassed to talk to anyone about my disease, as though it made me less than them. I sometimes feel like I suck at life while everyone else seems to have mastered the art of it and excelled. I’ve also been burnt enough times by well meaning friends telling me to ‘snap out of it’ or ‘just think positive’ that I learnt to keep my feelings to myself. Nobody wants to be the whiny friend, right? Some people don’t understand that with disease, comes grief and anger and hurt. I hurt for all that lost time when I was in a fog of illness that no one seemed to believe or care about. I’m angry at myself and feel deceived constantly by my own body. I grieve for lost time and for the loss of the life I thought I was going to have. My loved ones seem to get very edgy and nervous when I’m not being constantly ‘positive and pro-active’ and if there was just one thing I could make them understand it is that my life has been changed against my will and that it’s normal for me to feel ripped off, pissed off, powerless and scared sometimes. This is not wallowing and complaining; this is me trying to come to grips with my life as I now know it. The past year brought brand shiny new symptoms for me with ongoing Doctor visits and tests with the final conclusion being the diagnosis of Fibromyalgia and CF. Now more than ever I need to start being realistic about what I can and can’t do in order to stay well and feel good and that includes being open and honest about how I’m feeling and how I’m coping day to day. I guess if anyone else in my life wants to come on the journey with me, they are welcome but they’ll have to love me enough to let me have bad days as well as good! Time to start wearing my disease proudly – not because I’m proud to be sick, but because I’m proud to be sick AND still do all the wonderful things that I do.” manda :)

BEE


“Wearing my disease on my sleeve means not being ashamed to talk about my illness…learning to love, the best I can, the body morphing I’ve gone through because of this disease, and not making ANY excuses for my need for a nap, or a good cry, or not wanting to go out with friends after 8:00pm.”

JODY


Wearing my disease on my sleeve presents a number for things for me. Anxiety, because of all the things I have to explain that some might not understand. Why don’t I eat normally? Why don’t you do this goofy thing my sister or Aunt did to cure HER thyroid disorder? What’s a thyroid? My most frequent answer I gave was – you just don’t understand. Trying to explain my disease is more of a problem sometimes then living with my disease. Frustration, because some people live their lives to fullest while I feel I have to watch my every move. I have to watch what products I use, what food goes in my mouth and basic daily task that others take for granted. They look at a piece of fruit and lose weight, me I eat a piece of fruit – look longingly at a piece of bread and presto 2 lb gain. Depression, because of how long it took me to get diagnosed and the longer journey I have in front of me. I am Impatient at times because I want this thing to be fixed and to GO AWAY. I feel it is too much on my shoulders, I want to take it off and run through the hills without getting tired. JUST ONCE. But things have been changing for me. I see a light at the end of the tunnel. I am Learning new things, I feel that I am getting Control over my disease. I have Hope now. I have hope due to the wonderful people online that have helped me Laugh at my disease and have helped me feel Normal. They give me the Support I need to answer all the questions people ask me while I wear my disease on my sleeve. Jody of Hypogirl.com

LORI


Wearing My Disease On My Sleeve means “Awareness”. I think this is most important because if people were aware of how important the thyroid gland is to their functioning; if they knew they couldn’t live without a thyroid gland; if they knew there were so many untrue myths about thyroid cancers and diseases; if they knew it was a lifelong illness that isn’t simply managed by taking a pill everyday and that it can break families apart. If they knew how lonely it can be to have an invisible illness; that it changes every single aspect of a persons being from their hair, skin, eyes, nails and weight; even the functioning of digestion and urination, muscle and joint pain, and autonomic functions such as temperature, blood pressure and heart rate. If they knew thyroid disease could cause symptoms of depression, anxiety, mania, and psychosis. If people knew these things we would not be told our symptoms are in our head. Doctors would listen to us and believe us. Doctors would be better educated about thyroid disease, we would be diagnosed in a timely manner, and we would receive appropriate treatment. There would be emotional and financial support for patients and their families across the country and abroad. There would be ongoing research and education. Thyroid patients would never feel alone again! I have been dealing with illnesses and trying to find correct diagnoses for 10+ years. Today I turn 50 and this is my day to ‘Wear My Disease on My Sleeve’‚  I am angry about how my life has been derailed, how I was kept from growing and being the person I wanted, and from being the kind of Mom I wanted to be.  I am also angry that it took so long for my Hashimoto’s thyroid disease to be diagnosed and the implications of that. But, I am taking one step at a time coming out of the thyloset (closet); there is no going back now. However, my family does not want to know about my illness.  It makes them uncomfortable, and they prefer I pretend everything is fine. I have been limited in what I can do and for how long, and I am coming to terms with that because my life is easier and more enjoyable when I do that. I am angry that I do not have the kind of support I need.  I hope some day I can make people aware and see that I did not choose this and I did not do anything to cause it. It has been an overwhelming burden. I am very emotional about this process but I need to “feel” it and “experience” it, no matter how hard, in order to move forward.   I do not want another generation to go through what I am going through, that is why it’s time to stand up and be proud.   Being silent is wrong, it may make other people comfortable, but it’s my life.   From now on, I am my priority,  and I have new goals.   Three of those, (besides promoting awareness of,  this disease), are,  getting back to designing jewelry and,  getting through surgery to get my,  body/joints,  strong enough so that I can get back on a horse again, even just once. Wearing My Disease on My Sleeve means “Freedom”.   I am ready to do this because of the online support from my thyrellas and thyfellas who are always there when you need them.

CYNDI

I was going to fix the mirror image, but decided that my Hashimoto’s always has me bass-ackwards, anyway, so I’ll leave it!!!

LIZ


For me, disease is simply another way of saying “awareness”.   That’s because, before my diagnosis in 2007, I had absolutely no awareness of my body, my health, or anyone else’s body and health.   As contradictory as it may seem (because, after all, disease is an internal and often invisible process), disease brings you outside of yourself.   Disease brought me a bigger understanding of the world.   Disease opened my eyes to the reality of life and lives, which means I have compassion for others who are sick or for others who may one day get sick.   We never know who else may also be experiencing a chronic illness, and so, I try to be understanding.   Wearing my disease on my sleeve means letting the world know that I am painfully aware that I’m not the only person with a diagnosis, and I will not be the last.

JM

Before I was diagnosed I was crazy, busy, never REALLY took time to care for myself or others properly. Thyroid disease sucks! But, I am proud to say that I NOW live each day deliberately and with thought. When I wear my shirt, I am proud and hope others will ask questions sparking dialogue about Thyroid Disease. ,  Perhaps it’ll even make a fellow member of our “Thymunnity” feel not so alone if they see someone, “Me” or “You” Wearing Our Disease on Our Sleeve!!! I am but one of the MANY faces of Thyroid Disease.

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