Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?
Questions from Dear Thyroid:
1) Have the holidays and your experience of them changed since you’ve been diagnosed?
Yes, for better and for worse. The worst thing is just not having the energy to do all of the things I used to do and feeling like I’m neglecting everyone. It’s really difficult to make plans too because I feel unwell so often, I’m always anxious that I’ll get sick and miss out on things or feel like crap when I’m supposed to be having fun. The best thing that being sick has taught me is to really appreciate the good days and to spend more time with family because life is short and you never know what nastiness might be lurking up ahead. This year we’re having a ‘stuff-free’ Christmas which means having a holiday and spending time together rather than buying, giving and getting stuff. I’m really looking forward to having some fun times with my girls, they really are such a good help to me and I don’t get to spend enough time with them these days just doing kid stuff.
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?)
The typical Queensland Christmas is stinking hot and so it’s usually a BBQ, seafood or cold meat and salad for our family. I’m a sucker for the sweets though and my fave has been Pavlova since I was little. Now, I’m all for the rum balls too:) I definitely have to watch my diet a lot more since I’ve had Hashi’s but I can’t say that I have very good self control when it comes to holidays, it’s so difficult sometimes saying no to all the scrummy foods that will haunt me later on!
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?
One time someone said ‘you had a thyroid problem once, didn’t you?’ as though it was somewhere in the long distant past and I’d just popped a magical pill and it went away. I didn’t have the energy to enrol them in ‘Autoimmune Thyroid Disease 101’ at the dinner table so I just let it go. Jeez, I’m still having that Thyroid problem, just the once.
4) How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
Rest, don’t drink too much, eat well, relax, do my own thing – that’s the grand plan this year anyhow. Last year I wore myself out and got sick just from doing too much, staying up too late and not looking after myself for the whole Christmas-My birthday-New years stretch. I don’t want to do that again. I feel like I’m still very much a beginner and learning to manage my symptoms, just when I think I have things under control I’ll get sick again and I think -how did that happen? I was being so good!
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’d be afraid my immediate family would all roll their eyes and say ‘here she goes again’! There have been times that people have made assumptions about my disease and I wish I could give them a good enlightenment-and-education across the face, but mostly I just let it go, smile and nod, make nice. I find that people rarely want to ask me about my disease but often want to tell me about it, and mostly they are ill-informed.
6) Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
Last year i woke up sick on boxing day and felt like i couldn’t function at all. We were packing to go on a romantical weekend for my birthday and when I told Trusty that i felt sick, he said “well you’ll have to stay home then” which he seemed to find highly amusing. It’s one of those memories that is ingrained forever in my mind because it really hurt my feelings (could he at least help me pack or carry me to the car or spoon-feed me or something?) but I knew there was just no explaining to him in that moment how unwell I felt or how catching a cold with my shonky immune system could wipe me out completely. We were still ‘new’ then so I hadn’t yet properly introduced him to good old Hashimoto. Luckily, my trusty sidekick took me somewhere with a spa, so I could begin to recuperate:)
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?
I haven’t submitted a letter, though I’ve started many. Sometimes they are placid and grateful but most times they are the spewing forth of anger frustration and hatred. I wrote to my Thyroid after my Fibromyalgia diagnosis because I’m sure that lecherous gland invited Fibro to move in and help him trash the place so I threatened to evict them both. I can picture the letter my Thyroid would send me; it would be a death threat with letters cut out from the newspaper, just like in the movies.
8) If you could tell the world one thing about thyroid disease that you feel they don’t understand, what would it be?
That it is an invisible, life-long disease that needs ongoing management and that it’s symptoms touch every aspect of your life. Bad touch.
9) What is the greatest misconception regarding thyroid disease?
That there is a cure.
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?
Ooh…so many to choose from! I think the one that hurt me the most was from a ‘friend’ who said to me a couple of months after my diagnosis “you can only be sick for so long…it’s time to just snap out of it and get on with things” followed by a cutting criticism of my housework (or lack thereof) and general disorganisation. It made me furious because it sounded like she thought I was trying to prolong my illness or milk it for attention. I guess it highlights people’s misconceptions and the idea that once you start swallowing those pills, the disease should just disappear from your body. There was a weird argument conversation when I first met my out-laws that makes me laugh. I still find it unusual that people want to teach me about my own disease without actually being informed and will insist that I’m the one who is wrong! I think I would fall over backwards and eat my own hat if someone actually said to me “what is it like to have your disease? tell me about it…” and I’m often tempted to hold a pop quiz to test my loved ones knowledge and understanding!
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.