Thyoliday Blues and Truths

The lovely Katie Schwartz at Dear Thyroid e-mailed me a few weeks ago and asked me to take part in Dear Thyroid’s Thyoliday Blues and Truths this month. If you struggle with thyroid disease, you really should check them out.

Questions from Dear Thyroid:

1. Have the holidays and your experience of them changed since you’ve been diagnosed?

My first response when reading that question was “not really,” until I realized that’s not really true. My family’s favorite thing to do at the holidays is eat and drink. Like many people who suffer from thyroid disease (mine is Hashimoto’s), I had a growing sensitivity to food, namely starchy, carbo-laden foods. The slightest bites of bread seemed to send my stomach spiraling. In subsequent months I’ve had my medication altered to help address this effect, but prior to this, I’d been eschewing gluten and carbs, thinking a food allergy was to blame. That is, except at the holidays. I’ve always had issues with food and eating, and to have to forgo the one thing that said the holidays was something I’ve never been able to do, even in service of feeling better. I still struggle with this. I haven’t figured out a way to come to peace with this. Probably because I’m so exhausted all of the time.

2. What is your favorite holiday food/dish from childhood?  What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)

See above. I love the ham sandwiches we have at my parents, and the yeasty, buttery rolls my parents get to make them.

3. Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?

My eating. There are always, always comments about what I might or might not eat, so I just eat anyway and hope no one makes any comments and draws attention to me. Truth be told, thyroid disease remains one of those chronic conditions that people don’t understand, even though so many people suffer from it. I still agonize over whether or not anything I do or don’t do is reduced to “in my head” by those around me, and so whenever anyway points out my eating habits, I feel incredibly self-conscious.

Even last night at a holiday party, among girlfriends who completely understand that I have this, I feel like I have to prove to people that I do work hard and maintain a healthy diet, and all of this extra weight, exhaustion and stomach issues aren’t a result of poor choices or lack of discipline.

4. How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?

With each of these questions, I’m becoming more and more aware of how much thought I don’t give this, and yet it impacts everything. I don’t have coping strategies, mostly because it’s clear to me that I have hit a bit of a wall with it all, and don’t actively do much to get better, other than what I’m doing.

5. Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses?  If so, how do you educate them?

I don’t think so, but that’s mostly because I don’t talk about it beyond my blog. I still have trouble accepting it, I suppose. I do a poor job educating people. Am I alone on this one?

6. Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?

Nah. But I do get tired before everyone, especially if we’ve all settled in to watch movies. I pass out immediately.

7. Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?

Oh, I’d gather it would be a hate letter. When I first was diagnosed with an underactive thyroid in 2007, I was put on synthroid. I had been following a South Beach-style of eating, due to the aforementioned stomach issues, and lost 20 pounds in about three months. I felt pretty incredible, and was actually upset that it took this long to figure out that I had a thyroid problem. But then like so many people with a thyroid condition, my body shifted once more and the therapy I was following stopped working. In 2008, I gained all but five of the pounds I’d previously lost. To make matters worse, I’d injured my hip training for a triathlon and was out of traction for months. Currently I take synthroid and cytomel, and while both have done wonders in helping me with my exhaustion, my weight continues to cause me no short amount of grief. The main culprit, however, is stress. The thyroid is partially to be blamed, for sure, but I think if I was managing my stress a bit more productively I could deal with the weight issues more effectively. That said? I’m not about to beat myself up over 15 pounds.

8. If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?

Just that it’s real. There is nothing I’d like more than to not feel like a chronic ball of crazy. One of the things that, really, only my husband is aware of, is that not a day goes by where I’m not in some sort of pain for one reason or another. Again, I attribute much of this to stress, and my inability to manage it well, but something is always hurting or aching. Headaches, stomach aches, exhaustion…every day. I feel blessed to have a husband who, without fail, sees me through every bit of it, and knows it’s not all in my head or dramatics on my part. Perhaps, though, I should remind myself that my disease is real and could use more attention.

9. What is the greatest misconception regarding thyroid disease and thyroid cancer?

See answer to #8. I do think, however, that all people, before they get placed on anti-depressants, would do well to have their blood work done since so many cases of depression are actually a non-diagnosed thyroid condition. That’s more of a misconception about depression than thyroid disease, but I suffered from what I thought was depression for several years. Once I was tested and placed on medication, that particular cloud lifted.

10. What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?

I’ve actually never had anything stupid said to me. I’ve been lucky in that I have a blog that, when I wrote about being diagnosed with hypothyroidism/Hashimoto’s, found me the recipient of a lot of support from readers who also had thyroid disease. Mostly, though, many, many people have a hard time believing your weight issues are the result of your thyroid. Fat people are the last acceptable group to discriminate against and treat like shit, and despite all we know about dieting and health, we still look at people who are overweight as though they just don’t have the discipline to lose weight. There are people who choose not to monitor what they eat and do not exercise,  obviously, and so whether or not they lose or gain weight is not something of issue for them. That, also, has nothing to do with discipline. But for those who are overweight, and make the choice to monitor their diet and exercise, discipline just isn’t the issue.  The rest of the free world treating them like shit, however, seems to be.

In writing this tonight, I feel like it’s pretty obvious that since being diagnosed this Fall I haven’t done much in the ways of getting serious about taking care of myself. I’ve said before that this thing requires attention and care, and I’ve let work and life stress get in the way of getting healthier, or at least trying to. It’s not like I’ve done nothing – that’s for sure – but I’m sure there are some steps I could be taking that I’m not.

Perhaps a goal for the new year.

If you have thyroid disease, I encourage you to check out Dear Thyroid!

Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

7 Responses to Thyoliday Blues and Truths
  1. Katie
    December 14, 2009 | 3:51 pm

    Erin;

    This post brought me to tears. Your honesty was so breathtaking and you wrote straight from the heart. I felt every word like a razor blade.

    Like you, I still have trouble accepting it. I haven’t made peace with my disease. Mostly, I hope that I will wake up from the nightmare and it will be gone. The denial can run deep.

    I digress… I love what you wrote, every single detail. Each word needed to be said. I feel you, girl! We all feel you.

    Thank you SOOO MUCH for being you and for participating.

    PS: Your on the site.

    Wishing you the world.

    xo
    K

  2. Zari
    December 14, 2009 | 6:58 pm

    Erin I loved your post. But I wanted to comment that not beating yourself up over 15 lbs is quite sane. I’d go so far as to say that 15 lbs is not even worthy of the term weight issue……..Give yourself a break.

    Zari

  3. Erin
    December 14, 2009 | 7:02 pm

    Oh absolutely. But I was once very overweight, and out of shape, and spent many years getting healthy – mentally and otherwise. It was really hard to get to that place, and then watch as the weight piled on. I’m also pretty small, so 15 pounds means I don’t fit into most of my clothes, another situation that brings about mindfuck.

  4. Tamar
    December 14, 2009 | 11:25 pm

    Are you still on a gluten-free diet? I saw my naturopath today and she strongly recommends that I go gluten-free. Apparently more and more research is showing that gluten makes the antibodies much worse for those with auto-immune diseases like Hashimoto’s. There’s also a connection with dairy but that isn’t as well determined yet. Sigh.

  5. Zari
    December 15, 2009 | 8:23 am

    Erin having an eating disorder myself I can relate. I have to remember that it is a question of progress, not perfection. I too should probably lose another 10 to 20 lbs. Of course then I would need to buy a bunch of new clothes which is not where I want to be spending my money in the current economy. So i’m attempting to do that while doing my best to remember that this is a situation, not something that defines me.

    I do get pretty fed up with folks who think it’s not a party without food. I remember all the stuff about drugs, how people need to learn how to have fun without drugs and alcohol. Which was pretty much of a lie also, folks without substance abuse problems just don’t see the need to have a party without booze. But that’s them. It’s easy to say no to that. Much harder to say no to the food and I wind up avoiding eating parties sometimes. But that’s about the eating disorder, not the thyroid.
    Zari

  6. Susan
    June 29, 2010 | 9:26 pm

    Wow. Just, wow. A friend of mine just sent me over to your blog because I was just diagnosed with hasimoto’s and she thought I would like reading you. I am just getting started and I will thank her later for her suggestion!

    This post in particular really is hitting home. I have felt absolutely CRAZY for the last few years because of all the random aches and pains and weird things taking place in my body. I went to my doctor several times for foot pain, knee pain, wrist pain, rib pain and most recently, hip pain. I have been SO TIRED for so long. There is rarely a day that goes by that I don’t feel some sort of pain/ache somewhere. This hip pain is the worst because it has prevented me from running for the last month.

    Anyway, I read another post of yours (briefly) regarding PCOS. I have that as well. I have been dealing with that FOREVER. I really think that there may be some sort of link between PCOS and hypothyroidism. Who knows. It’s a pretty lame double-whammy though.

    And real quick, regarding one of your most recent posts about having kids, I feel the same was as you. I would love to have kids, but I can envision a life without them. And like you, while I can envision a good life without children, it makes me deeply sad to think of living an entire life without having kids. I also get PISSED off that this is something I have to deal with (regarding infertility).

    Feel free to email me! I think we have loads in common.

  7. Kris Mack
    February 10, 2011 | 4:04 pm

    I’m you’re taller twin with Hashi’s dx in April 2010- suffering in silence since 1996. I too will not obsess over those 15 pounds.

    Hi! I’m Kris and I stumbled upon your blog after googling: hashimotos’ weak legs- interesting right? I have read your posts on Thyroid and seriously… we have a lot in common. I’m 33, catholic, dog obsessed (his name is Ari and he is a mathematical genius and cooks the best pad thai EVER), graphic designer/marketing director married to the best guy ever. Creepy, huh?

    I just wanted to congratulate you on your pregnancy- I am scared to try with all the weirdness in my body. But it seems like it’s working out okay for you… so hmmm… ;-?

    One thing I do want to share with you is that in spite of only recently being dx with hashi’s- I quite gluten and soy three years ago… I gotta tell you- I believe there is something to that.

    Anyway… that’s all for my disjointed ramblings… I wanted to say hi!
    (Sorry I love ellipses a lot).

    Cheers!
    Kris Mack

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