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What Awareness Means To Me: Elaine Martinez
For the last few years my Thyroid Disease has been just as much or more a part of my life as eating. I cannot go without eating and I cannot go a day without this disease doing something to remind me I have it. My husband and family are reminded of it every time they see me. Why?? Because, this disease has changed me so much. Not only have I had to adapt to living with the symptoms of this, but so has my family.
The thing about all this is as much as we talk about it at home among ourselves, we do not talk about it that much in public. I think for years we all made excuses for my appearance and the change in my body and facial features. I know we did not do it intentionally. I think it was more of not understanding all that was happening to me and not knowing how to explain it. Maybe we just did not want to have to explain it to anyone. None of us wanted anyone to think I was crazy. Even though I am sure there are still people out there that do believe I was crazy. I know for a fact that a few people made remarks that I had been drinking to much or maybe on drugs. A very good friend even asked me if my husband and I were having marital problems. , Another asked me if my husband was mistreating me and told me where to go for help. I felt so bad that my husband was getting blamed for my actions and how I looked. I did not know how or what to say. I did not know enough about the disease I had to explain to anyone.
I would tell them I had Graves’ disease and Thyroid Eye Disease, but that did not mean a thing to anyone.
I was suffering and my husband was suffering for a disease that was not my fault or his. Bring awareness to the public about ALL the thyroid disease’s is not only important to and for those that have a Thyroid Disease of some sort or other, but it is also very important to the families. Yes, this is bad for us and yes we are going through hell every day. And yes, it is hard for us to function every day. The simplest thing can be hard for us to do. How many times do we tell ourselves;..WHY me?, I did not do anything to deserve this life and have this disease. I work hard and try hard to be a good person;..Why me?
Yes, that is the question. But, how many of us stop to think that our family may be asking themselves the same question. Yes, people look at us funny and judge us. But, how are they looking at our significant other or other family members when they are with us. They are also being judged and looked at funny.
Awareness is not just needed for the general public. It is needed by all different kinds of doctors, by the media , by celebrities that have a thyroid disease, by friends and family. I also believe we need more awareness by those of us that have a Thyroid Disease. You may ask why? The reason is right in front of our face every day of our lives. We have a Thyroid Disease, yet there is so much we don’t know about it ourselves. There are symptoms I have that I did not even realize other people with this disease had. There I go again, thinking it was just me or just in my head. Just my imagination, just being tired, just feeling sorry for myself, just making something out of nothing. Then I think;..It is not that bad, I can live with this, I can adapt. Well, yes we can adapt. We can because we have to. Awareness is not just about knowing about the thyroid and all it can do to us. Awareness is what we can do to live with it. What can our families do to live with it?, How can we do this to the best of our ability if we are not aware of ALL the symptoms and all the different things this disease can do to us?, How can our families live with this disease if they are not aware of what it can do to us?, How can society be aware of how to treat us if they are not aware of what the disease does to us?, How can anyone give us the respect we so much deserve if they are not aware of how this disease changes people and the life they live?
How can we expect any awareness if we are not willing to get out there and learn as much as we can about Thyroid Disease and in turn teach the public. How can we expect respect if we are not willing to be heard?, If we are going to hide, cover up, make excuses, or even ignore our own disease. We cannot hide, cover up, make excuses or ignore this disease any more. Now is the time to stand up and fight for awareness.
Tags: autoimmune disease community, autoimmune disease support, autoimmune diseases awareness month March, autoimmune literary community, awareness for autoimmune diseases, Elaine Martinez, Graves disease awareness, graves' disease
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8 Responses to “What Awareness Means To Me: Elaine Martinez”
Leave a Reply to Mary
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My friends and relatives weren’t adversely affected by my Graves just worried about my health. I was working for an optometrist at the time I got diagnosed and told him about my condition. I didn’t know what my symptoms would be and my endo didn’t tell me anything. I realize in hindsight that I looked like I was on drugs. I eventually got laid off from that job and the one who stayed actually was on drugs!
Great letter Elaine yes it does effect our families and we lose friend but at the end of the day if you still have family around we have to be grateful.
I too have Graves disease and GO and just like Lisa I took myself to my optometrist when friends kept asking me what was wrong with my eyes and I couldn’t tell them if it wasn’t for the optometrist writing a letter that day and making me go straight to my GP I would have still been going around with full blown Graves disease.
I knew something wasn’t right but put it down to my age and my GP kept putting it down to a virus and when I told him I was losing weight he said well looks like you needed too. fuck him excuse the french but that is English for jackass.
I never got to see an endo by the time my GP had messed about with blood test then repeat ones I ended up in hospital with a storm anyway and was put in IV and started straight way on medication.
I think GP’s and medical professions need to be more aware about the signs and symptoms of thyroid disease and GO. never mind just the public that is a starting point then we may get to the stage when everyone has a yearly health check this will include a full blood panel thyroid liver kidney full blood count etc maybe catching it early enough will help more people not go through the years of turmoil that most of us have suffered and families having to hide under the table when your having a graves rage, or wondering what the heck you are talking about.
My whole metabolism was up the creek and if one more doctor asked me did I drink alcohol I was going to bop him on the nose my liver enzymes were high my potassium and urea and gamma GT yet still they thought i was a chronic alcoholic well i can tell you I never touch alcohol and have never felt the urge to drink.
Elaine I am sure I read some where that you had RAI another thing doctors/Endo’s need to be aware of too is that GO or TED can be made worse by RAI so really isn’t an option when considering treatment for Graves disease suffers.
Thank you for sharing it’s good you have a caring family that understand to degree what you are goung through.
Lolly
Lisa; That is an incredible story. So, wait; did you find out about your GO post job?
Lolly;
This is so true I think GP’s and medical professions need to be more aware about the signs and symptoms of thyroid disease and GO.
So many of us were/are misdiagnosed and diagnosed incorrectly because doctors don’t know what to look for. They also (most) aren’t using the latest technology or proper panels for testing.
Sigh…
You are so right eduction and awareness needs to begin in the doctors office or the endos room. sigh sigh and fucking triple sigh.
Lolly You said that, babycakes. I was echoing your lollylicious sentiments 🙂
I do to believe doctors need to have awareness. How can they do the job of caring for us if they are not aware of the symptoms. I am lucky I finely found a doctor that did know about the symptoms. Took me 8 years to find him. * wasted years and 4 doctors that thought I was one…. a complainer, two… did not have time to listen to what “I Thought ” was wrong, three…. I was making things up and 4….just do what they tell me and I would do fine. Yeah right.
I too have had GD for 35 yrs took RAI 32yrs ago. I was fairly stable for 20yrs not counting when synthyroid changes their formula and during my pregnancy and living in Wyoming no doc, pharmacist anyone told me and I was on twice as much as I should have been had a toxic pregnancy and returned to normal weight two days after giving birth still took 6mths for a doc out of state to tell me about the change in the medication. Then came menopause. Again hard to find an MD with ears and now its been about 12yrs and finally they figured out after RAI 32yrs ago my damned thyroid is growing back along with thyroid cysts. I did corner one doc and ask why the hell they don’t tell us what is going to happen to us with GD. His reply is we would commit suicide. Some docs know about GD and some are curious but not very well informed. I went to the ER once with a broken shoulder and all the ER doc saw was my eyes and insisted on a head CT instead of looking at my shoulder. I’ve learned as much as I can by book or internet. GD sucks its there and we have to learn to live with it. My family has never understood this disease which started at puberty so I’m just crazy Mary my x-husband didn’t get it and only one of my kids gets it. So dear thyroid I wish I had never heard of you or the hell you can cause. Sincerely. Mary