Originally published on 27th July 2016 Last updated on 18th July 2019
I’ve covered many times, the ways in which hypothyroidism devastates many lives, taking control of many aspects and creating real challenges for those affected, and often, their family too. In this post, I’m going to focus on work.
My Experience of Struggling To Work with Thyroid Disease
You go to bed at 8pm because you’re so unbelievably tired. You sleep pretty much straight through, maybe waking briefly during the night, but nothing to hugely disturb the amount of sleep you get, before your alarm goes off at 7am for work. That’s 11 hours sleep. Yet you feel MORE tired than when you went to bed the night before. How is that possible?
You drag yourself out of bed, because unfortunately you have to work to keep your house and pay the bills, so you have a shower (if you’re lucky, you can manage this), get dressed and make your way downstairs. All of this was hard because it was like you were moving a dead weight. A body that didn’t want to do any of those things. Putting on your trousers left you breathless and getting in the shower almost made you collapse. You likely also felt a bit dizzy, light headed or weak whilst doing these things, as well, but you managed them, with enough time and persistence.
As you make your way out the house, your legs are trying their best effort to stop you. Walking to work/walking to your car/the bus stop is draining every ounce of energy you do happen to have left after that shambles of a night’s sleep. You feel sick, your heart is pounding and you’re having hot flushes.
You get to work, and even if you have a pretty sedentary job, it’s going to be a long day. The room feels freezing, even though everyone in the office doesn’t feel the same. When someone opens a window or puts on a fan, your bones ache even more and it makes all your symptoms ten times worse. You struggle to get out of your chair and walk to the toilet. You struggle to get yourself a drink or some food, if you even have the appetite for it. You struggle to type on your computer because your fingers individually hurt and your hands are weak. When the phone rings, your heart stops with the shock of a loud noise. Your reflexes are poor, and your arms absolutely aching, with this heaviness that’s like having weights tied to them, but you manage to answer the phone. You forget for a second what you’re supposed to say, then you muster up a “Hello, ___ speaking. How can I help you?” It comes out quiet and often croaky. You feel drained already and it’s only 9am. You’re exhausted in every inch of your body. Your fingers are heavy and stiff.
For the rest of the day, it’s a struggle to get anything done. You can’t think straight, and even the simplest of tasks take 100 times more energy than if you weren’t so fatigued. You answer the phone again later and forget completely what you’re supposed to say. You type an email and completely forget half way though what you were going to type. Someone asked you if you want a cup of tea, and you can’t compute what they’ve asked you. You have this mental block. This is thyroid brain fog.
Mid-afternoon, you get a sudden slump where you feel even worse. Your eyes are now heavier than ever, your blood pressure speeds up or slows down (could be either), and things like back ache and headaches set in. They’ll stay with you all day.
After what feels like a twenty hour day, you make your way home, barely even standing anymore. Your body is punishing you without any reason. Yesterday was a normal day. You didn’t overexert yourself and you haven’t done anything to deserve this struggle today.
You get through the front door and collapse on the sofa, just a few feet away from the door. You sleep for a couple hours, before waking up and seeing it’s about 8pm, so you make your way to bed, and sleep for another 10-11 hours, maybe even more. If you’re lucky, you manage to get some food and drink. The fatigue can make you feel sick, though.
You might sleep through the night, or tonight, despite feeling like you’ve ran a marathon, you toss and turn and can’t get to sleep, knowing how awful you’re going to feel the next morning, you’re in despair and can’t bare the next day. Your alarm goes off at 7am for work. You get up feeling more tired than when you went to bed the night before.
The same day unfolds.
How Hypothyroidism Can Affect Working
Hypothyroidism can wreak havoc on peoples’ work lives, with horrendous fatigue, aches and pains and brain fog alone, disrupting their efficiency, motivation and ability to get anything done. The simplest of tasks can feel like they require a hundred times more effort, be a hundred times more difficult, or confusing, and require much more patience and brain power.
The exhaustion of my inadequately treated hypothyroidism and missed adrenal fatigue, caused me to miss days off work, when I couldn’t even get myself up or down stairs unaided, let alone get myself to work and have the energy to do anything once there.
The brain fog and cognitive disturbances, affecting my learning, memory, perception and problem solving skills, severely affected my ability to respond to a simple email, answer the phone with the correct greeting or adapt to the new database that was enrolled at work last year. I’ve always been a fast learner when it comes to IT skills, and being the youngest person in my office, everyone expected me to become the resident expert, but I struggled more than anyone, due to the problems my hypothyroidism caused at work with my cognitive abilities. Read more about how thyroid disease made me feel embarrassed at work here.
With my adrenal fatigue, too, this made the anxiety worse and I was trapped in a vicious cycle. I was anxious about work, and then struggling at work made me even more anxious.
Being suicidally depressed at the time added even another layer to my struggle at work. I had zero motivation, barely cared about keeping my job and couldn’t concentrate on anything. All I could think about was how much physical and mental pain I was in, how tired I was all the time, how totally fed up I was, and basically, how I wanted it all to end.
A Familiar Story
This is a really familiar story to many thyroid patients, since many are kept non-optimally treated, when doctors test TSH only and keep them on T4-only medicine like Levothyroxine which doesn’t help them get better, and this is so sad.
For me, the depression was like a numb, hopeless feeling. I felt like I was in a deep, black hole, and there was no way of climbing out, so I gave up. It was a mental block that I couldn’t ‘think myself positive’ past and it consumed me. It was a constant feeling of doom, a pain in my chest that screamed for me to just end it all. I couldn’t bear living such a poor quality of life, with over twenty hypothyroid symptoms, any longer, and this made me depressed.
Signing Off Work
My GP wanted to sign me off work for a few months and my manager and colleagues wondered if this was the answer, too. However, something inside of me wanted to carry on working, at least as much as I could, and the thought of the anxiety I’d have when I needed to go back, didn’t sound appealing.
I was determined to prove people wrong, in expecting me to take time off. So I stayed at work, but I was missing anything from one to four days of the five days of work a week. This was most commonly due to the pure exhaustion I experienced, like I say, so bad I couldn’t get out of bed, and second most common was the pain. The aches and pains in every inch of my body were crippling. I missed a few days solely due to the depression and anxiety, which I can’t put in to words so well, as mental illness isn’t something easily described.
I was crippled, both mentally and physically, and doctors called me a hypochondriac, saying that I was imagining it, it was all in my head and caused by the depression. Yet, they couldn’t tell me why I was depressed and didn’t want to explore why.
Thankful For My Workplace
I’m lucky that my workplace were so understanding. Whenever I needed a day or two off, they just said OK. Colleagues would call or text me to check I was OK, and even the director called me to give me some words of support and comfort.
They let me know that they were there for me if I needed them, and my job was there for the days I could manage it. They pulled together and covered my work where they could, and on the days when I did come in, no big deal was made.
Every few weeks, my manager would take me aside to talk about how I’d been doing, which reassured me that they cared. It was perfect, really. I couldn’t have asked for anything more from them.
But this isn’t always the case for everyone. As knowledge about hypothyroidism with the general public is so poor anyway, workplaces often aren’t aware of how much it can cripple people. Doctors refusing to listen about how our inadequately treated hypothyroidism is affecting us and our work lives, are also causing a lot of harm, since this reiterates what our work colleagues already think.
Talk Talk Talk
We need to be open to our work colleagues about having this condition, and how difficult it can be for us.
I kept everyone updated with my diagnosis and treatment of hypothyroidism, so they knew exactly what was going on. This meant they were understanding of my situation and clued up on just how difficult it can be to manage. When I needed a day off, they knew I was having a particularly hard day with it, and believed me. I didn’t hide anything from them.
I even cried at work when it got too much, which really opened their eyes. I’m not saying to go in balling your eyes out or sharing too much information, but do educate who you work with.
Explain to your manager that your thyroid can get in the way sometimes and tell them how. Arrange a fundraising activity at work to raise money for a thyroid charity, like a bake sale for example, and put up posters. People will ask what hypothyroidism is and it’s your chance to raise awareness of it as a condition, but also how it affects you personally.
Build good knowledge of this condition, so that people are more understanding and supportive. After all, we tend to spend so much of our time at work, the people we work with should know what we go through.
You can also show this open letter to your friends, family and coworkers, to hopefully get them to understand a bit more, what it is we go through.
Working With a Thyroid Patient
If you work with someone who has a thyroid disorder, then it is important to understand that if they need to cancel plans or call in to work sick, then this is likely a very hard thing for them to do.
We try very hard to live as normal a life as possible and keep up with everyone else, so admitting that it’s too much for us at times can be difficult. We can feel defeated and fed up. So please realise that when this is our life, we often have no real control of this health condition and so we are not to blame for the consequences.
Discriminated At Work
If you feel discriminated at work, based on your health condition/s, you have a right to complain.
If you think you’ve been unfairly discriminated against you should try to raise it with the person, your line manager, or even talk to Acas or Citizens Advice, or a trade union representative, if things cannot be sorted out informally. You might be able to take a claim to an employment tribunal for discrimination. Check if you can get legal aid to help with your legal costs if you think you’ve been discriminated against. Employers must follow the law on preventing discrimination at work.
You can click on the hyperlinks in the above post to learn more and see references to information given.
Please remember that if you’re a thyroid patient living with poor mental health or lingering physical symptoms, that you don’t have to live this way. To address why you may still be feeling unwell (often despite being on thyroid medication too), please see this article and go through each suggestion, putting your thyroid jigsaw back together.
Written by Rachel, The Invisible Hypothyroidism
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Rachel Hill is the highly ranked and award-winning thyroid patient advocate, writer, blogger, speaker and author behind The Invisible Hypothyroidism. Her thyroid advocacy work includes blogging, writing books, speaking on podcasts, being interviewed, writing for various websites and co-creating Thoughtful Thyroid courses. Rachel has worked with The National Academy of Hypothyroidism, BBC, The Mighty, Yahoo, MSN, ThyroidChange and more. She is well-recognised as a useful contributor to the thyroid community and has received eight 2019 WEGO Health Award Nominations.