The Mighty Logo

What It's Like to Experience a Hashimoto’s Thyroiditis Flare

The most helpful emails in health
Browse our free newsletters

I have a few chronic illnesses, and the one that currently causes the most trouble is Hashimoto’s thyroiditis – which is sensitive to stress of any kind.

Last week, I went on a quick family vacation. A 10 hour road trip there, two great days, and then another 10 hour road trip home. I love road trips with my husband, and I love the family we spent time with for these two full days. But even though it’s fun, and a change of scenery is good for my heart and soul, it’s still stressful. It’s a good stress, to be sure, but it’s stressful.

We got back home late Saturday night and I was just fine. I slept good, I had a healthy dinner, I stretched like normal. But Sunday morning I woke up creaky, achy and breathless (“air hunger” is a symptom Hashimoto’s). I went to the grocery store, and I had to recover in my car when I got done. I went to church, and I couldn’t comfortably stand during the worship songs. That’s when it hit me: I was in the beginning stages of a flare.

A day during a flare is so very different from a normal day. Every day is impacted, definitely, but when I’m not in a flare, I take my medications, do my yoga, walk a little, drink plenty of water and I can keep the distracting pain and brain fog at bay.

Mornings are hardest, by far, whether I’m in a flare or not. When I’m not flaring, it takes half an hour or so to get out of bed. I hit the snooze button two or three times, take my thyroid medication, stretch in bed, get up, start the shower. I sometimes do a quick yoga routine in the shower, and I’m out the door on the way to work in 20 minutes.

During a flare, I wake up long before my alarm sounds. My joints and back hurt so badly that even with medication, I can’t sleep through it. I wake up mad too. Not at anything in particular, but emotions are not always rational. So when I wake up and everything hurts so bad I can’t walk without hobbling, I’m just angry. I take a long, hot shower. I stretch my body out as best I can because the hot water helps me loosen up, as my muscles have tightened in the night more than usual because of the pain. It takes twice as long as usual because I’m moving slowly and I have to double check everything. My memory doesn’t work well when I’m in a flare-up and I don’t trust myself to remember everything.

On the way to work, on a regular day, I try to make calls for work. I usually use the seat warmers in my car to help with my back pain. When I’m in flare, I use the seat warmers on the highest setting and I can’t make calls. I don’t trust myself enough to allow myself to be distracted. The brain fog makes it hard enough to concentrate on one thing at a time, and certainly driving is too dangerous to try to multitask.

Spending the day at work during a flare makes for exhausting days, which obviously compounds the flare. I take a lot of pride in my job and I genuinely enjoy what I do and my team, so on a regular day, I like being at work. I laugh with my clients and coworkers. It’s a regular 9:00 to 5:00 in an office setting, so nothing physically strenuous.

The thing is, chronic illness makes an office job strenuous. When I’m in a flare, my briefcase is too heavy. It hurts my shoulders and my elbows to pick it up. The water from the dispenser is so very cold, it hurts me when I swallow it. But the coffee is really hot. So I get a coffee and water it down so I can have something to drink. Since my hands hurt, I use a styrofoam cup so that it warms my hands up and that helps with my hands while I’m typing. My skin hurts. My shirt resting on my back feels heavy and my pants are irritating. Everything else still hurts. Pain killers take the edge off, but that’s it. The pain is still very much present. However, I’m usually able control my attitude so that I’m not angry at work. If anything, I’m quieter, but I still joke and chat.

I have some coping mechanisms to get through the day. I have taken a nap under my desk, I have a heating pad on my chair, and I’ve done yoga in the break room. People look at me like I’m odd, but I don’t really care. It’s extremely important that the quality of my work not lack in any way, so I do my best to focus and get it done, but I can’t focus like on a regular day, so I get half as much work done. So then I get a little behind, which piles up the work for a regular day.

I have a wonderful team, but I prefer they not know the extent of my illness so I simply don’t talk to them about it. I only tell them if I’m having nausea or have an appointment and will be out. They don’t know from day-to-day if I’m in a flare or not. I’m just not comfortable crossing this line with them because I’ve been met with cynicism and judgement. They ask sometimes. They say my eyes are cloudy or I look stiff. I smile and tell them I’m fine.

On a regular day, after work I might run a few errands or stop by a friend’s house. I rarely go out to eat because I follow a fairly strict diet. I haven’t had an alcoholic drink in close to two years, so no happy hours. I might go to the park and try to walk a couple miles or meet up with a group I volunteer with to work on projects. Any day of the week, I’m home by 10:00 or so and asleep soon after.

During a flare, there is no “after work.” I leave work and go home and sleep it off. The only thing, for me, that helps me recover is sleep. During the work week, I basically lose a week to the flare because I need a solid day or two to rest to get over it. I sleep after work but can’t fully recover from a flare without a couple days off work. My husband is an ideal partner, and he does the housework and makes sure I eat. My dog and two cats like to sleep with me, so I am fortunate in that I am well-supported and I don’t feel alone.

It’s not as though I have to try to sleep. During a flare, it’s all I want. The fatigue is overwhelming. It’s frustrating to feel exhausted but have pain that keeps me awake, and I often take medication to control that part. Some people are opposed to medication, my opinion (and my opinion only, I’m not giving advice here) is that exercise and eating right really goes far, but medication is a big help and I rely on it.

To be in a flare feels like a hangover and the flu at the same time, and it’s incredibly hard to function. There’s no social life, housework, family time, or exercise. It’s crushing and painful and emotional. To get through the day is a feat. And then I try to sleep it off and do my very best to prevent another one. So far, I haven’t figured out how to outsmart this damn disease.

Getty Image by fizkes

Originally published: May 16, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home