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Patients for a Moment: Awareness Edition
Welcome to the latest edition of Patients for a Moment, a patient-centered blog carnival. For this edition, Dear Thyroid posed the following questions to bloggers:
How has your disease changed your view of awareness? Do you feel that raising awareness is important? Do you feel the need to educate others about your disease? If so, how do you go about it?
Dorienne Plait of Too Much on Our Plait blogs about how her thyroid cancer diagnosis showed her the need for more education and early detection of thyroid diseases and cancers. She discusses the importance of using real-life stories to raise awareness. Read more about her own story and how she uses her personal experience with cancer to raise awareness in her post Like Daughter—37.
In her post And I’m telling you…, Mweelin of Thyroid Cancer? Really? discusses how being diagnosed with cancer has given her the desire to raise awareness, educate others, and dispel the myths commonly associated with thyroid cancer.
Nessie over at Lipstick, perfume and too many pills talks about how psoriatic arthritis has changed her view of chronic and invisible illnesses. In her post waiting for my real life to begin, Nessie states that awareness truly has real meaning when we are able to reach out to each other.
Phylor, blogger of Phylor’s Blog: chronic pain, life, and all that, paints a beautiful picture about awareness in her post I am in/visible: awareness of invisible illnesses. Her detailed comparison of public’s perception of her visible illness (badly broken wrist) and her invisible illnesses spotlights the lack of public understanding of the effects of chronic pain.
In her post The Awareness of Being, Laurie of hibernationnow blogs about how her difficulty climbing a set of stairs brought her to the conclusion that, while chronic pain sufferers can identify with each other, the invisible nature of their illnesses make it difficult for the public to understand what they deal with on a daily basis.
Thank you to everyone who participated in this edition of PFAM! The next edition will be hosted by Sick Momma on September 22nd.
Tags: chronic illness awareness, invisible illness awareness, patient-centered blog carnival, Patients for a Moment Blog Carnival, PFAM, PFAM hosted by Dear Thyroid, thyroid cancer awareness
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3 Responses to “Patients for a Moment: Awareness Edition”
Leave a Reply to SharonM
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I’d like to say that I’m more “aware” or something like that but I’m not – I’m just grumpier than usual. I don’t feel the need to educate others about my disease – who wants to be Debbie Downer?
I think raising national awareness is important if it results in more research on alternative methods & treatments or potential cures for auto immune diseases. But so far, up until now at at least, national awareness of Thyroid Disorders has escaped my attention with the exception of the Oprah thyroid debacle & Dr.Oz’s clear ignorance on the matter. WTF?
But on a more local or personal level raising awareness is not something I engage in. I do look at overweight people differently,I don’t judge – ever. When I see someone with slightly protruding eyes & bags underneath I want to ask if they have Graves but how can I? In general I just find myself looking at people & I wonder how they are really feeling & if they are they are poorly too.
When I was first diagnosed with Graves in ’08 I told my immediate family & a couple of friends and the general reaction was, “what’s that?” & when I explained about my thyroid & being hyper & that I could take meds to feel better it was more like “oh,ok – you are probably not eating properly”. My sister thought that I was simply menopausal(I’m only 40!) & that it sounds
“like stress”. I got lot’s of “are you sure it’s not..” More pearls of wisdom came from my mom, “Nanny had something wrong with her thyroid once but it just went away – she never needed medicine!” – this only served to further validate her suspicions that there was anything wrong with me at all. Oh yes, & apparently “you’re hot all the time because you live in Florida” – silly me, why didn’t I think of that?
It didn’t matter that the iodine uptake scan conclusively showed Graves, the bloodwork was off the charts hyperthyroid. The general & subtle vibe that I got from them was that Graves was just another disease that had been concocted by the medical community to blame for stress or being run down. Their ignorance made them suspicious of how valid the disease was. It pissed me off & surprised me because I would have been straight on Google & reading about Graves if any of my family members had been diagnosed, I would have wanted to know more about it. Whatever. I decided to suck it up & not talk about it again because I sort of understood where they were coming from. I didn’t like it but I understood.
Sick people want other people to know they are sick. We need to talk about it, vent, empathize with each other & make healthy people “aware”. So if you are lucky enough to be perfectly healthy you damn sure are going to get sick sooner or later from all the guilt you are supposed to carry around for being healthy in the first place! & if your not guilty then your scared because you are being force fed scary information on a 24/7 cycle so you’d better donate & donate regularly to one of the thousands of causes out there screaming for your help & “awareness”! because karma can be a bitch.
TV, radio, magazines, billboards, car stickers – we are inundated with causes & pleas for awareness every day – each cause fighting for it’s place on the hierarchy of worst illness or disease. I go to the grocery store & at the checkout I’m asked to donate a dollar for this cause & that cause. I’m not a scrooge or indifferent. I get it & I know it’s necessary but I just feel we live in a society that is saturated with “awareness” that ironically most of it gets tuned out – except for the big stuff like cancer. So I’m thinking that Graves is so low down on the list that it’s not worth mentioning unless I’m around others that are dealing with it but I haven’t met anyone with Graves, at least not to my knowledge. In my mind it doesn’t feel important enough – you know? So this whole “awareness” thing eludes me.
I realize this all sounds a little dramatic but this is the place I’m coming from when I choose not to say “like shit” when the lovely lady at the meat deli in Publix asks me “how are you doing today?”. Does she really need to know I have Graves Disease? She might be sicker than me.
I’ll just save my grumbling rants for on here 🙂
Sharon~ I have to say ,how similar our stories. I just find this to be so hurtful that the people closest to us, our family, won’t be understanding and interested in our Graves.
My daughter roles her eyes. She is in her 30’s. She thinks when I have a bad day I’m just looking for attention. Maybe that’s true. Don’t we need people to comfort us. Didn’t I tuck her in at night. Why is this so annoying to our LOVED (?) ones.
I have also wanted to talk with her because I know this can pass in the family generation to generation. She has my twin grand~daughters. What measures can I make to keep them from getting thyroid to a level where it causes Graves? I went for so many years being treated for different ailments, when FINALLY I nearly had a heart attack it started to come together. Might I have been treated long before it got so bad?
I learned that my Grandmothers sister had a goiter. Well what else??? And why wasn’t this mentioned long ago.
Nobody wants to talk shop, in the family about health.
My young husbands family had a serious time bomb, my father in law had heart attacks. He survived a few bad ones. In fact he out lived my husband who had his at 34 and it was fatal.
My son had an EKG this summer, he is now 30. He has been worrying about it and had feelings that scared him and he got it checked. He is fine. But I have talked about it with him. We have changed the lifestyle of his fathers.
Maybe the family is just too fearful to consider the seriousness of these illnesses. Nobody talks about death or the possiblities. After my husband died I became an outcast in the community where I used to live.
Its like people think that getting close to others with these serious life issues will make them “catch it”.
Well I thought I’d share these thoughts that I’ve had on the subject. It is lonely, and hard to understand.
My very best to you, Linny
Sharon I would love to talk more, I need to have my son help me do a site so I can visit with some I have things in common with….I’m working on it! Linny