Rachel Hill

@theinvisiblehypothyroidism | contributor
Rachel Hill, a thyroid patient advocate and author, is the multi-award winning and highly ranked writer behind the website ‘The Invisible Hypothyroidism’. Diagnosed with Hypothyroidism and Hashimoto’s, she covers all aspects of what it’s like to live with these, is passionate about helping those with hypothyroidism and giving them a voice, and is well-recognised as a useful contributor to the thyroid community. Rachel's work can also be found on her twitter, facebook, instagram, website and book: “Be Your Own Thyroid Advocate”.

Hypothyroidism: Getting Sick After Going Out, Having Fun

Last weekend, I had a pretty typical weekend for a 23-year-old. It was my other half’s birthday on Saturday, so we had friends around, a few drinks (nothing too wild) and stayed up to around 1 a.m. On Sunday, we went to visit family, leaving the house at midday, and then went for a walk around a park for about an hour in the evening. The average person turning up to work come Monday morning therefore may feel a bit tired, but not hugely affected. After a few drinks (nowhere near enough to cause a hangover) and staying up until past midnight, you might feel a bit sleepy or even practically normal. Me? I’m really ill. As the alarm went off at 6:45 a.m. this morning for work, I felt like a zombie. The muscles in my feet and hands had been cramping and aching all night and although I got a lot of deep sleep, I still felt like I was going to collapse. I managed to drag myself out of bed and have a wash, get dressed and take myself downstairs, all the while feeling incredibly nauseous and dizzy. I sat on the sofa until I could muster some energy to move but felt like a dead weight. Today, I am beyond tired. I am heavily fatigued as my body can’t keep up. It’s failing me. I struggled to walk to the tram stop to catch the tram to work, out of breath, hunched over in appearance and heart pounding. I sat at work with the muscles in my legs screaming in agony, my brain feeling fogged and confused beyond words and my stomach churning. I’m going to be sick, I think to myself. I just wanted the discomfort to end. I live with chronic illness. A couple of them actually, and I have some other health conditions on top of them too. Day to day, I am able to keep them well managed to a certain extent. I get to bed by 9 p.m. so that I get nine hours of sleep at least. I eat lots of protein, am gluten-free and count my spoons (plan my energy usage very carefully). I’ve learned what helps to manage my conditions. But sometimes they flare up out of nowhere. I’m not always sure what causes them to get worse again for a while. I have to take time off work, stay in bed for a few days or longer and cancel all plans, concentrating on getting better. Just like when you come down with the flu for example. And other times, like today, I know why I’m feeling so unwell. It’s because I stayed up late (although, not crazy late, as you’ve read already), had two rum and cokes on Saturday evening and dared to go for a walk on Sunday evening. I even paused every 10-15 minutes of walking to sit and rest for 10 minutes. I dared to try and do some pretty regular things that a 23-year-old should be able to do and now I’m paying for it. How other people my age manage to do anything on weeknights or several nights in a row is beyond me. I work Monday to Friday and after each day’s work I come home and practically collapse on the sofa. Some days, I can find the energy to make dinner, tidy the house or shower. Others, I just sleep. I go to work and then sleep. Then work and sleep. And…you guessed it: go to work and come home and sleep. And that’s what this week is going to be like, all because I dared stay up late, have a few drinks and go for a walk this last weekend. I live life with chronic illness and it’s downright difficult and unfair. But what am I supposed to do? Never drink? Some people with chronic illness don’t, because of how rubbish it makes them feel afterward. Even though for me, when I’m a drink or two down, I feel so much more energetic and full of life. It actually makes me feel “normal” again. Should I never socialize? Never go for a walk in the sun? Or do I just accept that, should I want to do “regular people things,” I just have to “pay” for it afterwards? In order to never miss time off work, I should spend my weekends just like my weekdays, and stay in and rest. No quality of life. My health is so up and down that in the past I’ve been able to have a weekend like that and be OK for work come the start of a new working week. Sometimes it wears my body out, sometimes it doesn’t. A body is so intricately wired and all of my health conditions are linked to each other in a system known as the endocrine system, which means that when one part of that system goes awry, it has a knock-on effect and other processes go awry, too. It’s a delicate and volatile balance. And I’m forever torn. I refuse to live a miserable existence of limiting my ability to see friends, have fun or get out the house due to my health conditions. But at the same time, if I ignore them completely, I make myself more ill by putting too much pressure on an already struggling body. I’m conflicted. Follow this journey on The Invisible Hypothyroidism. We want to hear your story. Become a Mighty contributor here.

Hypothyroidism: Getting Sick After Going Out, Having Fun

Last weekend, I had a pretty typical weekend for a 23-year-old. It was my other half’s birthday on Saturday, so we had friends around, a few drinks (nothing too wild) and stayed up to around 1 a.m. On Sunday, we went to visit family, leaving the house at midday, and then went for a walk around a park for about an hour in the evening. The average person turning up to work come Monday morning therefore may feel a bit tired, but not hugely affected. After a few drinks (nowhere near enough to cause a hangover) and staying up until past midnight, you might feel a bit sleepy or even practically normal. Me? I’m really ill. As the alarm went off at 6:45 a.m. this morning for work, I felt like a zombie. The muscles in my feet and hands had been cramping and aching all night and although I got a lot of deep sleep, I still felt like I was going to collapse. I managed to drag myself out of bed and have a wash, get dressed and take myself downstairs, all the while feeling incredibly nauseous and dizzy. I sat on the sofa until I could muster some energy to move but felt like a dead weight. Today, I am beyond tired. I am heavily fatigued as my body can’t keep up. It’s failing me. I struggled to walk to the tram stop to catch the tram to work, out of breath, hunched over in appearance and heart pounding. I sat at work with the muscles in my legs screaming in agony, my brain feeling fogged and confused beyond words and my stomach churning. I’m going to be sick, I think to myself. I just wanted the discomfort to end. I live with chronic illness. A couple of them actually, and I have some other health conditions on top of them too. Day to day, I am able to keep them well managed to a certain extent. I get to bed by 9 p.m. so that I get nine hours of sleep at least. I eat lots of protein, am gluten-free and count my spoons (plan my energy usage very carefully). I’ve learned what helps to manage my conditions. But sometimes they flare up out of nowhere. I’m not always sure what causes them to get worse again for a while. I have to take time off work, stay in bed for a few days or longer and cancel all plans, concentrating on getting better. Just like when you come down with the flu for example. And other times, like today, I know why I’m feeling so unwell. It’s because I stayed up late (although, not crazy late, as you’ve read already), had two rum and cokes on Saturday evening and dared to go for a walk on Sunday evening. I even paused every 10-15 minutes of walking to sit and rest for 10 minutes. I dared to try and do some pretty regular things that a 23-year-old should be able to do and now I’m paying for it. How other people my age manage to do anything on weeknights or several nights in a row is beyond me. I work Monday to Friday and after each day’s work I come home and practically collapse on the sofa. Some days, I can find the energy to make dinner, tidy the house or shower. Others, I just sleep. I go to work and then sleep. Then work and sleep. And…you guessed it: go to work and come home and sleep. And that’s what this week is going to be like, all because I dared stay up late, have a few drinks and go for a walk this last weekend. I live life with chronic illness and it’s downright difficult and unfair. But what am I supposed to do? Never drink? Some people with chronic illness don’t, because of how rubbish it makes them feel afterward. Even though for me, when I’m a drink or two down, I feel so much more energetic and full of life. It actually makes me feel “normal” again. Should I never socialize? Never go for a walk in the sun? Or do I just accept that, should I want to do “regular people things,” I just have to “pay” for it afterwards? In order to never miss time off work, I should spend my weekends just like my weekdays, and stay in and rest. No quality of life. My health is so up and down that in the past I’ve been able to have a weekend like that and be OK for work come the start of a new working week. Sometimes it wears my body out, sometimes it doesn’t. A body is so intricately wired and all of my health conditions are linked to each other in a system known as the endocrine system, which means that when one part of that system goes awry, it has a knock-on effect and other processes go awry, too. It’s a delicate and volatile balance. And I’m forever torn. I refuse to live a miserable existence of limiting my ability to see friends, have fun or get out the house due to my health conditions. But at the same time, if I ignore them completely, I make myself more ill by putting too much pressure on an already struggling body. I’m conflicted. Follow this journey on The Invisible Hypothyroidism. We want to hear your story. Become a Mighty contributor here.

Hypothyroidism: Getting Sick After Going Out, Having Fun

Last weekend, I had a pretty typical weekend for a 23-year-old. It was my other half’s birthday on Saturday, so we had friends around, a few drinks (nothing too wild) and stayed up to around 1 a.m. On Sunday, we went to visit family, leaving the house at midday, and then went for a walk around a park for about an hour in the evening. The average person turning up to work come Monday morning therefore may feel a bit tired, but not hugely affected. After a few drinks (nowhere near enough to cause a hangover) and staying up until past midnight, you might feel a bit sleepy or even practically normal. Me? I’m really ill. As the alarm went off at 6:45 a.m. this morning for work, I felt like a zombie. The muscles in my feet and hands had been cramping and aching all night and although I got a lot of deep sleep, I still felt like I was going to collapse. I managed to drag myself out of bed and have a wash, get dressed and take myself downstairs, all the while feeling incredibly nauseous and dizzy. I sat on the sofa until I could muster some energy to move but felt like a dead weight. Today, I am beyond tired. I am heavily fatigued as my body can’t keep up. It’s failing me. I struggled to walk to the tram stop to catch the tram to work, out of breath, hunched over in appearance and heart pounding. I sat at work with the muscles in my legs screaming in agony, my brain feeling fogged and confused beyond words and my stomach churning. I’m going to be sick, I think to myself. I just wanted the discomfort to end. I live with chronic illness. A couple of them actually, and I have some other health conditions on top of them too. Day to day, I am able to keep them well managed to a certain extent. I get to bed by 9 p.m. so that I get nine hours of sleep at least. I eat lots of protein, am gluten-free and count my spoons (plan my energy usage very carefully). I’ve learned what helps to manage my conditions. But sometimes they flare up out of nowhere. I’m not always sure what causes them to get worse again for a while. I have to take time off work, stay in bed for a few days or longer and cancel all plans, concentrating on getting better. Just like when you come down with the flu for example. And other times, like today, I know why I’m feeling so unwell. It’s because I stayed up late (although, not crazy late, as you’ve read already), had two rum and cokes on Saturday evening and dared to go for a walk on Sunday evening. I even paused every 10-15 minutes of walking to sit and rest for 10 minutes. I dared to try and do some pretty regular things that a 23-year-old should be able to do and now I’m paying for it. How other people my age manage to do anything on weeknights or several nights in a row is beyond me. I work Monday to Friday and after each day’s work I come home and practically collapse on the sofa. Some days, I can find the energy to make dinner, tidy the house or shower. Others, I just sleep. I go to work and then sleep. Then work and sleep. And…you guessed it: go to work and come home and sleep. And that’s what this week is going to be like, all because I dared stay up late, have a few drinks and go for a walk this last weekend. I live life with chronic illness and it’s downright difficult and unfair. But what am I supposed to do? Never drink? Some people with chronic illness don’t, because of how rubbish it makes them feel afterward. Even though for me, when I’m a drink or two down, I feel so much more energetic and full of life. It actually makes me feel “normal” again. Should I never socialize? Never go for a walk in the sun? Or do I just accept that, should I want to do “regular people things,” I just have to “pay” for it afterwards? In order to never miss time off work, I should spend my weekends just like my weekdays, and stay in and rest. No quality of life. My health is so up and down that in the past I’ve been able to have a weekend like that and be OK for work come the start of a new working week. Sometimes it wears my body out, sometimes it doesn’t. A body is so intricately wired and all of my health conditions are linked to each other in a system known as the endocrine system, which means that when one part of that system goes awry, it has a knock-on effect and other processes go awry, too. It’s a delicate and volatile balance. And I’m forever torn. I refuse to live a miserable existence of limiting my ability to see friends, have fun or get out the house due to my health conditions. But at the same time, if I ignore them completely, I make myself more ill by putting too much pressure on an already struggling body. I’m conflicted. Follow this journey on The Invisible Hypothyroidism. We want to hear your story. Become a Mighty contributor here.

Hypothyroidism: Getting Sick After Going Out, Having Fun

Last weekend, I had a pretty typical weekend for a 23-year-old. It was my other half’s birthday on Saturday, so we had friends around, a few drinks (nothing too wild) and stayed up to around 1 a.m. On Sunday, we went to visit family, leaving the house at midday, and then went for a walk around a park for about an hour in the evening. The average person turning up to work come Monday morning therefore may feel a bit tired, but not hugely affected. After a few drinks (nowhere near enough to cause a hangover) and staying up until past midnight, you might feel a bit sleepy or even practically normal. Me? I’m really ill. As the alarm went off at 6:45 a.m. this morning for work, I felt like a zombie. The muscles in my feet and hands had been cramping and aching all night and although I got a lot of deep sleep, I still felt like I was going to collapse. I managed to drag myself out of bed and have a wash, get dressed and take myself downstairs, all the while feeling incredibly nauseous and dizzy. I sat on the sofa until I could muster some energy to move but felt like a dead weight. Today, I am beyond tired. I am heavily fatigued as my body can’t keep up. It’s failing me. I struggled to walk to the tram stop to catch the tram to work, out of breath, hunched over in appearance and heart pounding. I sat at work with the muscles in my legs screaming in agony, my brain feeling fogged and confused beyond words and my stomach churning. I’m going to be sick, I think to myself. I just wanted the discomfort to end. I live with chronic illness. A couple of them actually, and I have some other health conditions on top of them too. Day to day, I am able to keep them well managed to a certain extent. I get to bed by 9 p.m. so that I get nine hours of sleep at least. I eat lots of protein, am gluten-free and count my spoons (plan my energy usage very carefully). I’ve learned what helps to manage my conditions. But sometimes they flare up out of nowhere. I’m not always sure what causes them to get worse again for a while. I have to take time off work, stay in bed for a few days or longer and cancel all plans, concentrating on getting better. Just like when you come down with the flu for example. And other times, like today, I know why I’m feeling so unwell. It’s because I stayed up late (although, not crazy late, as you’ve read already), had two rum and cokes on Saturday evening and dared to go for a walk on Sunday evening. I even paused every 10-15 minutes of walking to sit and rest for 10 minutes. I dared to try and do some pretty regular things that a 23-year-old should be able to do and now I’m paying for it. How other people my age manage to do anything on weeknights or several nights in a row is beyond me. I work Monday to Friday and after each day’s work I come home and practically collapse on the sofa. Some days, I can find the energy to make dinner, tidy the house or shower. Others, I just sleep. I go to work and then sleep. Then work and sleep. And…you guessed it: go to work and come home and sleep. And that’s what this week is going to be like, all because I dared stay up late, have a few drinks and go for a walk this last weekend. I live life with chronic illness and it’s downright difficult and unfair. But what am I supposed to do? Never drink? Some people with chronic illness don’t, because of how rubbish it makes them feel afterward. Even though for me, when I’m a drink or two down, I feel so much more energetic and full of life. It actually makes me feel “normal” again. Should I never socialize? Never go for a walk in the sun? Or do I just accept that, should I want to do “regular people things,” I just have to “pay” for it afterwards? In order to never miss time off work, I should spend my weekends just like my weekdays, and stay in and rest. No quality of life. My health is so up and down that in the past I’ve been able to have a weekend like that and be OK for work come the start of a new working week. Sometimes it wears my body out, sometimes it doesn’t. A body is so intricately wired and all of my health conditions are linked to each other in a system known as the endocrine system, which means that when one part of that system goes awry, it has a knock-on effect and other processes go awry, too. It’s a delicate and volatile balance. And I’m forever torn. I refuse to live a miserable existence of limiting my ability to see friends, have fun or get out the house due to my health conditions. But at the same time, if I ignore them completely, I make myself more ill by putting too much pressure on an already struggling body. I’m conflicted. Follow this journey on The Invisible Hypothyroidism. We want to hear your story. Become a Mighty contributor here.

Gina Rodriguez Reveals Struggle With Suicidal Thoughts

On Monday, “Jane the Virgin” star Gina Rodriguez shared for the first time her struggle with suicidal thoughts, comparing mental health struggles to a “silent little dragon in your head.” Rodriguez spoke with NBC’s Kate Snow at The Kennedy Forum, a mental health advocacy organization, in Chicago. Prior to Rodriguez’s appearance, Snow’s husband, Chris Bro, talked about the impact of losing his father to suicide. Rodriguez told Snow there have been times when she thought the world would be better without her, an experience common to many who have been suicidal. “I think I started dealing with depression around 16,” Rodriguez said. She added: I started dealing with the idea of … everything is going to be better when I’m gone. Life will be easier; all the woes will be away, all the problems. Then I wouldn’t have to fail or succeed, right? Then all this surmounting pressure would go away. It would just go away. Rodriguez continued by pointing out that in her Puerto Rican household, talking openly about mental health struggles wasn’t encouraged, an experience common in many Latinx households. “It was that easy to end those kind of conversations in our household,” Rodriguez said. “And it was that easy to gather shame and say, ‘Well then not talking about it is easier. Dealing with it by myself is easier.’” When she first revealed she lived with anxiety in an Instagram post in 2017, Rodriguez told Snow even though she was nervous to speak openly about her mental health, it became an important way to remove the shame she felt about struggling. The actress has also been open about living with Hashimoto’s disease, a thyroid condition that causes decreased thyroid hormone production. During her conversation with Snow, Rodriguez shared depression can be a common side effect of Hashimoto’s, highlighting how sometimes chronic illness and mental health issues can go hand-in-hand. Rodriguez told Snow it’s important for her to speak up about having suicidal thoughts, and asking others directly if they are considering suicide. She learned this through her own experience in therapy after several therapists Rodriguez saw didn’t want her to say the word suicide, and dismissed those as “bad thoughts.” But Rodriguez knew she needed to say her suicidal thoughts out loud so they didn’t have so much power in her personal life. “I felt that before, not too long ago, and it’s a very real feeling,” Rodriguez said. “There was a point where I couldn’t push through every single time anymore. … It’s the conversation that starts the healing.” If you’re struggling, know you are not alone and help is available. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or reach the Crisis Text Line by texting “START” to 741741. To connect with a community that cares, head to our # CheckInWithMe page. There you can read stories and post a Mighty Thought or Question to give and get support. For other stories that have helped The Mighty community, check out the following articles : What People Who’ve Been Suicidal Want to Tell Someone Who’s Suicidal Today When You Really Think Your Family Would Be Better Off Without You I Want You to Want to Live

Feeling Tired With Hypothyroidism and Adrenal Fatigue

Imagine this: You go to bed at 8 p.m. because you’re so unbelievably tired. You sleep pretty much straight through the night, maybe waking briefly, but nothing to hugely disturb the amount of sleep you get, before your alarm goes off at 7 a.m. for work. That’s 11 hours of 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 take a shower (if you’re lucky, you can manage this), get dressed and make your way downstairs. All of this was hard because it felt 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, lightheaded or weak whilst doing these things as well, but you’ve learned to manage them, with enough time and persistence. As you make your way out of the house, your legs are making their best effort to stop you. Walking to work/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 are 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 9 a.m. 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 completely forget what you’re supposed to say. You type an email and completely forget halfway through 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 backache and headaches set in. They’ll stay with you all day. After what feels like a 20-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 8 p.m., 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, despite feeling like you’ve ran a marathon, you might toss and turn, unable to sleep, knowing how awful you’re going to feel the next morning. You’re in despair and can’t bear to think about the next day. Your alarm goes off at 7 a.m. for work. You get up feeling more tired than when you went to bed the night before. Again. The same day unfolds. ***** Most people, when reading that, would imagine this is the life of someone with the flu or a similar illness. Most people only experience a day like this when they’re ill. Not every day. But this is a typical day of many thyroid patients and/or someone with adrenal fatigue. I have both, and I’ve had many days like this. Adrenal fatigue affects many people with thyroid problems, so those people, in effect, receive double the dose of fatigue. Often this level of fatigue and struggle are signs of a patient who is not yet on the optimal dose of medication for them (this can take a while to figure out), but for some it never really goes away. We’re all so different. Can you imagine how fed up you’d feel, feeling this way every day? How frustrated you’d be? How much of an impact it would have on your daily life? This scenario demonstrates how thyroid patients typically have no time for socializing or doing anything they enjoy. Our lives revolve around sleeping and trying to stay awake. It’s a struggle to function “normally” and maintaining a job with this condition can be incredibly difficult. Some are even bedridden. The impact it then has on mental health can be devastating. This absolute fatigue leaves you unable to climb stairs, unable to type on a computer at work, unable to get out of your chair, unable to just stay awake – or at least very hard to do so. It’s more than being tired. I don’t mean “you had a late night and are a bit groggy today” tired, I mean absolutely exhausted. Like you could fall asleep with every blink you take. When getting up the stairs is such a horrendous task that you have to start planning about half an hour before you want to go upstairs to physically prepare yourself for it. And even then, you need someone to help you. I guarantee, if you do not have a chronic illness, you will not know what this fatigue feels like. A lot of thyroid patients wake up in the morning and no matter how good their night of sleep was, they never feel refreshed. They often feel more tired and incredibly unwell. Mornings can be so difficult for a thyroid/adrenal patient. Everything is a huge effort and they never find themselves “rearing to go.” Many find themselves having to start the morning with caffeine, and it barely does anything – if it does anything at all – to help their fatigue. We get the “mid-afternoon slump” around 1 p.m. – 3 p.m. where we feel ready to drop off completely. People are often unsympathetic and can’t understand why we need to sleep so much, often thinking it’s laziness or avoidance. But little do they know! Can you imagine your life being ruled by sleep, where everything you do has to be considered alongside your energy levels? Many thyroid patients say they can only get things done if they have a “can’t stop” attitude. The moment they sit down or rest their eyes, they’re done for the rest of the day, and they pay for it over the next few days. Before I got my thyroid properly treated and began looking at my adrenal health, completing simple tasks like taking a shower, doing the food shopping or putting the laundry in the washing machine would knock me out. I’d wake up after 14 hours of sleep some mornings, load the washing machine, sit down with a cup of tea and fall back asleep immediately for another five hours. On weekends, my Saturdays and Sundays were both reserved for trying to get as much sleep as possible. I’d binge-sleep on the weekend, hoping it’d “top me up” for the working week, but it made no difference. I had no life. With thyroid fatigue, you could get 14 hours of sleep or four hours of sleep and feel exactly the same. At my worst, I felt like a 21-year-old in a 91-year-old’s body! And that is no exaggeration. It’s especially frustrating for those of us who used to be so active. I loved keeping active and exercising a lot, but my hypothyroidism and adrenal fatigue stopped me from walking anywhere and working out, which I used to do most days. I was lucky just to get to the toilet upstairs unaided. My ability to keep up work, relationships and housework was diminished. So you can probably imagine that sometimes thyroid patients living with this have to cancel plans, and sometimes it’s quite last-minute. Though it’s no fault of their own. All they do is sleep and think about sleep and plan sleep, so when they have plans to do something else, it’s usually the light at the end of the tunnel. So if they have to cancel, you can imagine how devastated it makes them. The next time you think they might be making up excuses, being lazy or being a cop-out, please realize that when this is your life, you have no real control and you’re not to blame. We didn’t choose to have underactive thyroids. When a thyroid or adrenal patient says they’re tired or fatigued, we really mean truly, absolutely, abnormally exhausted. This post originally appeared on The Invisible Hypothyroidism. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

What My Thyroid Flare-Ups Feel Like

This is what a thyroid flare can look like. Body weighed down, hot and cold flushes, room spinning, migraine, legs like jelly. I woke up this morning knowing I was in a flare. I had slept for over 10 hours but felt more tired than when I went to bed. My body felt as if it was being weighed down in to the bed. My head pounded with a migraine. As I slowly peel myself out of bed, I run a bath – my first line of defense. Laying in it for half an hour, some of the weight pushing me down was lifted temporarily but I go from feeling freezing cold and having goosebumps to flushing and sweating, worrying that I’ll pass out. I get out the bath and sit on the bed. It takes me 15 minutes to get dressed, piece by piece. I have work to do today and I refuse to give in to this flare, so I put on proper clothes instead of PJ’s. I walk down stairs as slowly as possible so as not to fall – the muscles in my legs are failing and feel like jelly. How? I’ve just slept for 10 hours. I make breakfast and a cup of tea somehow. Hoping that eating and drinking will help. I take a sumatriptan (prescribed migraine medication) and hope my migraine will soon subside. I have work today and have to be on a business call in a few hours’ time. I put on some basic makeup – mascara, blush and lip balm – and run a brush through my hair before pushing it back with a headband. I smile in the mirror as I somehow look well put together and “normal,” yet I feel like death. I sit at my desk and attempt to work but my head pounds, the room spins, I can’t sit up straight and my body flashes with scorching heat. After an hour of stubbornly telling myself I can push on through, I throw in the towel, close the laptop and tears burst out of my eyes. I stand up from the desk chair to walk to the bathroom next door and get some tissue, but my legs buckle. Collapsed on the office floor, I wonder what I did to deserve this? Went partying last night? Got drunk? Haven’t slept much all week? Skipped taking my thyroid medication? No, I did two go karting sessions yesterday and somehow, that’s enough to throw my body in to a total meltdown today. This is the reality of a 25-year-old with hypothyroidism and Hashimoto’s, which is mocked by comedians and not taken seriously by many, paying for a normal activity the day before. I feel like I’m in someone else’s body. As I write this, my legs throb, the run spins, my head is foggy, I’m flashing from hot to cold and cold to hot and I can barely walk. It’s not the flu or a virus – it’s hypothyroidism. A flare up.

The Mighty Launches Guides to Help Patients Understand Their Illness

Before I joined The Mighty, I worked for a large digital health publisher overseeing the site’s Crohn’s disease content. I edited hundreds of articles about Crohn’s and inflammatory bowel disease (IBD). I thought I knew everything there was to know about Crohn’s, but there was one thing I didn’t know — that I had it. I was diagnosed with Crohn’s disease three months after leaving that job. When I saw my new gastroenterologist to discuss my treatment plan, we spoke about the disease like colleagues. “Corticosteroids,” I told him. “That’s the first line of defense, so I’m guessing we’ll start there.” He smiled, nodded and asked, “You know so much about Crohn’s, how could you not know you have it?” That question bothered me for years. The answer, however, is quite simple. Crohn’s is defined as a disease that has periods of remission. The disease flares or is quiet. I’d felt sick since my teens with various bouts of bleeding, consistent pain and digestive issues. Until the big flare that landed me in the emergency room, there were very few fluctuations. Even now, when I am technically in remission, I still have digestive pain. This distinction may seem nuanced, but I’ve never seen it mentioned anywhere. At least, not in the articles I’ve edited. When I spoke to the people with IBD I’ve met in my career as a journalist, I asked them if the disease is as black-and-white as is painted — disease or remission. Every single person I asked said they’ve yet to return to how they felt before their diagnosis. That remission is murky. Approximately 72 percent of internet users say they’ve searched the web for health content. Most of these searches are to learn about a condition they or someone else have. There are a lot of authoritative health websites with great information you can trust, but they are all missing one key thing: the patient experience. The Mighty has elevated the voices of those living with illness and disability since its conception five years ago. While personal stories are integral to our understanding of disease and disability, they do not replace the expertise of medical professionals nor can they compete with all of the encyclopedic health information available online. That’s why The Mighty is launching a new initiative that makes health more about people — information that combines the expertise of both the medical and patient community. The Mighty’s Condition Guides feature the perspectives of all different types of experts — from researchers whose work focuses on understanding the disease, health care professionals who’ve dedicated their lives to treating the condition, and those living with it. To promote accuracy, each guide has also been medically reviewed. Our first guide is for a condition important to The Mighty community: fibromyalgia. We have more guides on the way (Ehlers-Danlos syndrome, borderline personality disorder, endometriosis, multiple sclerosis are next up) — and hope to eventually have a comprehensive resource for every condition out there. For our first guide, we surveyed 13,997 people diagnosed with fibromyalgia about their symptoms and experiences. Our questions covered topics such as: how many years it took to get diagnosed, whether the condition affects the ability to work and treatments people have tried as well as which they found most successful. We also asked people living with the condition what’s missing from other content out there to best address the community’s needs. We worked with patient advocates, nonprofits and peer-reviewed research to select medical experts to interview. The guides are living documents. That means new research and data will be added when relevant, so be sure to check back for updates. While the guides are focused on evidence-based medicine, they also discuss natural remedies and other therapies those surveyed say they use in their care. And because chronic illness and mental health issues often go hand in hand, we also talk about coping with your diagnosis. We hope these guides will help you and your loved ones on your health journeys. There are many barriers to accessing care. There shouldn’t be barriers to quality information. If you are a health journalist, patient advocate or medical professional who would like to use our content or research, we’re happy to collaborate. Send an email with your request to conditionguides@themighty.com.

When Autoimmune Hypothyroidism Changed My Personality

Developing a chronic illness or being diagnosed with one often changes your life in both obvious and not-so-obvious ways. Areas it Touches Depending on the level of severity that the person experiences, they may see changes in their personal life as they have less energy than they used to and struggle to keep on top of housework, for example. They may see changes to work, as they put adaptations into place to make working with their health condition easier. And changes in relationships often happen too, as some friends inevitably drop off the radar when you’re less able to make social events or they become less interested in you because you’re “sick,” and they don’t know what to say to you. A Change in Personality But one change that perhaps isn’t noted very often is the way in which the diagnosis or development of a health condition can lead to the change in your personality. Since developing Hashimoto’s, hypothyroidism and more, I know my personality has changed. It’s a realization I’ve only come to more recently, despite holding these diagnoses for years now. The way in which having hypothyroidism, a condition resulting from low thyroid hormone levels, has given me fatigue, brain fog and poor stamina to name just a few key symptoms, has definitely taken me from the bright, switched on, chatty, active and full-of-life Rachel, to a ditzy, sometimes absent-minded, reserved individual who may even be perceived as “lazy.” Before becoming very ill, before my diagnoses, I was active — taking part in dance lessons, badminton sessions, hours of walking and running every week. Before the thyroid condition, I was a quick learner, a sponge soaking up everything and anything. I was always top of the class or in the top few. My Worries But I worry these days that work colleagues and even some friends think of me as ditzy, lazy and uninterested in conversations of meetings, when I struggle to contribute. The truth is, my brain sometimes lags behind everyone else’s and it’s only 10 minutes later that I have something to add to the conversation that my brain has now processed, but has equally passed in the present! At the worst points of having hypothyroidism, I have gone from being very active to not being able to climb the stairs unaided. I’ve gone from quick thinking and great ideas to yawning deeply and looking blankly at someone as they ask me a question. But, however big the negative changes to my personality may be, the positive changes are even bigger. And better. Positive Changes To My Personality and Life Through learning to advocate for my own health and feeling empowered by that responsibility, I have become more confident. I am more confident in advocating for my own healthcare (and subsequently, other peoples’), yes, but also more confident all-around. I speak up for myself these days. I worry less about what other people think about me because I’m more self-assured. I am confident in my own abilities to do whatever the heck I want to because I have proven time and time again that I can do it. I can slot a piece of the big thyroid jigsaw back in to place and make a step forward in terms of my health (e.g. with a thyroid medication change) but I can also write an article for a website and receive praise. I’ve even written a book. Without my diagnoses, neither of these would be possible. My personality would never have changed in this way if it wasn’t for the thyroid condition existing. Sure, I always loved writing, but I never had a niche or topic to get passionate about. My diagnoses gave me that. It gives me a lot of what I’m passionate about and thankful for today. Feeling More Appreciative I am also more appreciative. When you don’t always know if you’re going to wake up feeling your best or worst, you learn to savor the good health days. I am more appreciative of the simple ability to walk on the days that I can, because I know that flare-ups in my condition can come out of the blue sometimes. I appreciate the smaller and simpler things in life. I also appreciate the things I know my peers won’t until they’re a bit older. I appreciate the value of proper nutrition because everything I eat and drink either helps or hinders my health. I appreciate slowing down and I don’t need to be out partying every weekend. I appreciate calm dinners with friends. I appreciate having enough energy to change the bed sheets. I am much more aware of my blessings. And the other major way my personality has changed with chronic illness diagnoses is by becoming more understanding. By having my own world turned upside down, I developed empathy for others going through difficult times and trying to keep their head above water. I’ve always been a sympathetic character, but I could suddenly really put myself in another’s shoes and found a new sense of really feeling for them. You see, although my health conditions can negatively affect my personality in some ways, the positive ways in which it has changed it far outweigh them. And the nature of my conditions mean that they can get better and then sometimes get worse again. Flare ups, good days and bad days. Good health and not-so-good health. It’s a bit of a roller-coaster if I’m honest! And I’m not always able to see the next drop or pre-empt it. How My Health is Now Right now, I’m thrilled to be in a very good place with my health, but it’s well managed at the moment and steadily improving. I’m still piecing together my thyroid jigsaw to reach optimal health again but I’m getting there and along the way there have been and will be many ups and downs in my health. So right now, I feel quite clear-headed and on top of my game. But that foggy minded, ditzy and sleepier Rachel can and probably will make an appearance again one day. In fact, it could be tomorrow, as flare ups don’t always mean weeks or months of heightened symptoms, but can even mean 24 hours. And when those personality alterations rear their head again, I will remind myself of all the good ways these health conditions have improved not only me as person, but my life and impact on the world too.

When Autoimmune Hypothyroidism Changed My Personality

Developing a chronic illness or being diagnosed with one often changes your life in both obvious and not-so-obvious ways. Areas it Touches Depending on the level of severity that the person experiences, they may see changes in their personal life as they have less energy than they used to and struggle to keep on top of housework, for example. They may see changes to work, as they put adaptations into place to make working with their health condition easier. And changes in relationships often happen too, as some friends inevitably drop off the radar when you’re less able to make social events or they become less interested in you because you’re “sick,” and they don’t know what to say to you. A Change in Personality But one change that perhaps isn’t noted very often is the way in which the diagnosis or development of a health condition can lead to the change in your personality. Since developing Hashimoto’s, hypothyroidism and more, I know my personality has changed. It’s a realization I’ve only come to more recently, despite holding these diagnoses for years now. The way in which having hypothyroidism, a condition resulting from low thyroid hormone levels, has given me fatigue, brain fog and poor stamina to name just a few key symptoms, has definitely taken me from the bright, switched on, chatty, active and full-of-life Rachel, to a ditzy, sometimes absent-minded, reserved individual who may even be perceived as “lazy.” Before becoming very ill, before my diagnoses, I was active — taking part in dance lessons, badminton sessions, hours of walking and running every week. Before the thyroid condition, I was a quick learner, a sponge soaking up everything and anything. I was always top of the class or in the top few. My Worries But I worry these days that work colleagues and even some friends think of me as ditzy, lazy and uninterested in conversations of meetings, when I struggle to contribute. The truth is, my brain sometimes lags behind everyone else’s and it’s only 10 minutes later that I have something to add to the conversation that my brain has now processed, but has equally passed in the present! At the worst points of having hypothyroidism, I have gone from being very active to not being able to climb the stairs unaided. I’ve gone from quick thinking and great ideas to yawning deeply and looking blankly at someone as they ask me a question. But, however big the negative changes to my personality may be, the positive changes are even bigger. And better. Positive Changes To My Personality and Life Through learning to advocate for my own health and feeling empowered by that responsibility, I have become more confident. I am more confident in advocating for my own healthcare (and subsequently, other peoples’), yes, but also more confident all-around. I speak up for myself these days. I worry less about what other people think about me because I’m more self-assured. I am confident in my own abilities to do whatever the heck I want to because I have proven time and time again that I can do it. I can slot a piece of the big thyroid jigsaw back in to place and make a step forward in terms of my health (e.g. with a thyroid medication change) but I can also write an article for a website and receive praise. I’ve even written a book. Without my diagnoses, neither of these would be possible. My personality would never have changed in this way if it wasn’t for the thyroid condition existing. Sure, I always loved writing, but I never had a niche or topic to get passionate about. My diagnoses gave me that. It gives me a lot of what I’m passionate about and thankful for today. Feeling More Appreciative I am also more appreciative. When you don’t always know if you’re going to wake up feeling your best or worst, you learn to savor the good health days. I am more appreciative of the simple ability to walk on the days that I can, because I know that flare-ups in my condition can come out of the blue sometimes. I appreciate the smaller and simpler things in life. I also appreciate the things I know my peers won’t until they’re a bit older. I appreciate the value of proper nutrition because everything I eat and drink either helps or hinders my health. I appreciate slowing down and I don’t need to be out partying every weekend. I appreciate calm dinners with friends. I appreciate having enough energy to change the bed sheets. I am much more aware of my blessings. And the other major way my personality has changed with chronic illness diagnoses is by becoming more understanding. By having my own world turned upside down, I developed empathy for others going through difficult times and trying to keep their head above water. I’ve always been a sympathetic character, but I could suddenly really put myself in another’s shoes and found a new sense of really feeling for them. You see, although my health conditions can negatively affect my personality in some ways, the positive ways in which it has changed it far outweigh them. And the nature of my conditions mean that they can get better and then sometimes get worse again. Flare ups, good days and bad days. Good health and not-so-good health. It’s a bit of a roller-coaster if I’m honest! And I’m not always able to see the next drop or pre-empt it. How My Health is Now Right now, I’m thrilled to be in a very good place with my health, but it’s well managed at the moment and steadily improving. I’m still piecing together my thyroid jigsaw to reach optimal health again but I’m getting there and along the way there have been and will be many ups and downs in my health. So right now, I feel quite clear-headed and on top of my game. But that foggy minded, ditzy and sleepier Rachel can and probably will make an appearance again one day. In fact, it could be tomorrow, as flare ups don’t always mean weeks or months of heightened symptoms, but can even mean 24 hours. And when those personality alterations rear their head again, I will remind myself of all the good ways these health conditions have improved not only me as person, but my life and impact on the world too.