Monday, January 28, 2013

Hashimoto's Sucks and People Don't Get It

I took some time off from anything that wasn’t entirely necessary to focus on my health for a few months.  I have learned quite a bit, though I have also learned that I don’t know nearly enough.  It is easy to get very overwhelmed by the avalanche of information available out there on Hashimoto’s disease / autoimmune diseases.

I have struggled with getting the people in my life, family/friends/co-workers to understand what I feel like, what I’m going through.  Unfortunately unless you look sick on the outside people don’t generally believe you are sick on the inside.  I found a couple of great resources during my research.  The first, a letter from someone that has the disease and explains what it feels like really well, I am Hashimoto’s Disease, if you are interested it’s a good link for a description of the daily struggle. Another one is a letter to friends and families of people with a thyroid disease, When Your Family Member or Friend Has Thyroid Disease, it’s also a good way for people to learn about the experience.

I will note here that Hashimoto’s disease is not curable, though I’m hoping that through diet and exercise it is  manageable. The past year was a roller coaster (not the fun kind) of health issues….I lost and gained weight (40-50 pounds!) over and over again without changing a thing, my hair fell out in clumps, my skin would get so dry it would crack, I forgot almost everything that I was told if I didn’t write it down and I would be completely overwhelmingly exhausted for a few days then feeling good the next few days after that.  I can’t even begin to explain how frustrating this disease is.

The thing is, even though I found some good resources to give my family and friends to describe my experience, I’m starting not to care what other people think about it.  Why does it matter to me what they think about a personal struggle I have?  For now I’m choosing to share it only with my husband and close family. They are the ones that matter, my friends matter but they don’t see everything that particularly my husband does.  He understands, my parents understand, and that’s what matters to me.

I’m back to blogging, I hope to share what I have learned so far with anyone interested in reading about my journey.  I will share some really great GF recipes I have tried and talk more about my daily experience.  If nothing else, I hope to be a resource for someone that was in the place I was in last year…..sick and feeling like I was going crazy because nobody could see what was happening.  This is me and my experience.

2 comments:

  1. Gonna follow your blog, looking forward to reading through past posts when I have more time. Just diagnosed with Hashi but have been hypo on Synthroid for years and have felt dead for that long as well. Nice to "meet" you!

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  2. I just got diagnosed with Hashimoto's today, this after a long, sad journey of health problems, most of which stem from a very rare genetic disorder. I already lost most of my friends years ago, when they freaked out over the idea of me being 23, physically broken and in the ICU. There's just no room to be ill but still be loved. I am 31 now. I have achieved the impossible during these years of hell, but it's still not enough. I'm so tired. I've gotten so fat. I've lost my looks. One more disease--it's too much. My limit has been reached and exceeded. Have you ever experienced the weird paradox of feeling totally numb, yet at the same time each step, each breath, each effort is just pure torture? You're right. Nobody sees. And even if they did, most of them wouldn't care.

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