The Dilemma of Wanting to Have Fun but Knowing Your Body Will Pay for It

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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 1:00 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 9:00 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 five 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.

woman wearing a long dress and posing next to her front door

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.

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What 'I’m Tired' Means to Someone With Hypothyroidism and Adrenal Fatigue

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A woman explains what feeling “tired” means to her as someone with hypothyroidism and adrenal fatigue.

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What ‘I’m Tired’ Means to Someone With Hypothyroidism and Adrenal Fatigue

You go to bed at 8 p.m. and your alarm wakes you up 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.

You drag yourself out of bed and everything feels like you are moving a dead weight.

Walking to your car is draining every ounce of energy you do happen to have.

You get to work and you know it’s going to be a long day.

The room feels freezing, even though everyone in the office doesn’t feel the same.

You struggle to type on your computer because your fingers individually hurt and your hands are weak.

You feel drained already and it’s only 9 a.m.

You can’t think straight, and even the simplest of tasks take 100 times more energy than if you weren’t so fatigued.

You have this mental block. Thyroid brain fog.

After what feels like a 20-hour day, you make your way home, barely even standing anymore.

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.

Your alarm goes off at 7 a.m. for work.

When a thyroid or adrenal patient says they’re tired or fatigued, we really mean truly, absolutely, abnormally exhausted.

We didn’t choose to have underactive thyroids.

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When I Bonded With a Stranger Over Having Thyroid Disease

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In July last year, I completed the 5k Color Run course, raising money for Thyroid UK, a charity that campaigns for and provides information and support to those with thyroid disease and related disorders. I wanted to help them in their mission to provide information and resources to promote effective diagnosis and appropriate treatment for people with thyroid disorders. As someone with hypothyroidism, it was really important to me.

three women throwing yellow powder after completing a 5k color run

The 5k went well and at a pub in the evening, while having a drink to celebrate my achievement (having hypothyroidism made the course difficult to complete), I visited the toilet. After coming out of the cubicle and washing my hands in the sink, I commented on the pair of amazing shoes the woman standing next to me was wearing. They were mega high and bright pink and sparkly. She explained that she was here for a wedding and asked what I was here for. I replied that I had done the The Color Run that day, going on to explain what it was.

She asked if it was for a charity and I explained that regular entry isn’t, it’s just a 5k course, but there’s nothing stopping you from doing it for a charity, which is what I did. So she asked which charity I did it for, to which I replied “Thyroid UK,” waiting for her blank expression. Most people don’t even know what a thyroid gland is, so getting a blank or confused look back isn’t unusual.

Her face dropped.

She replied, “You’re kidding?!” and pointed to a scar on her neck. She had hyperthyroidism (overactive thyroid disease – I’m underactive) and was having real trouble getting it properly medicated, so she was losing hair and struggling to put on any weight. She had been having a really distressing time with it and spilled her guts to me.

We had a good chat about it all (the trials and tribulations of thyroid disease) and she said it gave her goosebumps having met me that day. She couldn’t believe it.

She hadn’t spoken to anyone else about having hyperthyroidism before. Ever. She had always kept her diagnosis of this disease to herself because she felt that no one would understand. Not even anyone she personally knew – yet she felt connected to this stranger she’d just met because they also lived with a thyroid problem. She was shocked to discover another patient.

But the thing is, thyroid disease is extremely common.

Awareness and knowledge of thyroid disease is shockingly poor. It’s not an excuse for being overweight or underweight. It’s not an excuse for being lazy. And it’s definitely not easy to live with. We struggle to get adequate testing and treatment. But we should talk about it.

So many people have it and don’t speak to others for fear of being ridiculed or misunderstood.

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When I Worry That Brain Fog Makes Me Look Bad at Work

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Prior to my decline in health due to the development of autoimmune hypothyroidism (an underactive thyroid), I was top of my class or among the top in every school class, year on year. I did well at school and college and I had a thirst for learning whatever I could. I enjoyed learning.

Going into my first few jobs, this carried through. I began a business apprenticeship and I jumped out of bed in the morning with motivation and drive to have another day filled with learning new things and developing my skill set. I was on the ball, motivated, bright eyed and switched on, often ahead of my peers or colleagues.

I’m naturally a very organized person and enthusiastic about life.

But when my health started to slip, and boy did it slip badly, I started to get a whole host of hypothyroid symptoms and these affected not only my home life, but my work life, too. These symptoms included fatigue, brain fog, depression and generally feeling slow in thoughts and speech. I began getting things mixed up and muddled, including what I was supposed to do and when, forgetting things and saying the wrong words.

For instance, picking up the phone at work and saying “Good morning… Urm… Oh… How can I help?” as opposed to “Good Morning, office XYZ, Rachel speaking,” is an example of how thyroid brain fog has affected my professionalism and ability to work. And it was embarrassing. It should be an easy thing  to do, to answer the phone with the correct greeting.

As well as forgetting things, I also mix up words completely, for example, “What are we having for dinner?” coming out my mouth as “What are we doing for sellotape?” When I say these actually quite comical things, I usually wait for the response, unaware that what I wanted to say and what actually came out was pretty different, and as the person I’ve said it to looks confused, I realize I’ve done it again. I’ve “done a Rachel” or getting muddled.

Answering a question is also often not easy for me to do. Somehow, questions really confuse me. It’s like my brain can’t process them at all! So when your boss starts asking about stats and things and your brain makes you reply “Huh?” it’s not impressive or helpful.

I can read whole texts of information and have no clue what I’ve just read, my brain unable to process it, thanks to the brain fog. I often look at a word and can’t for the life of me make that connection in my brain that says “this word is “cat.'” I just stare at the word and don’t know what it is or means. I can’t read it and that is really crazy. I often feel like I’m going mad.

Starting a letter or email can therefore take me ages, too. I’m just sitting, staring at a screen and figuring out what I’m supposed to be doing. Type anything, I say to myself. I can’t even muster up a few basic bullet points to get me started some days.

I’ve also become slower in my speech. I often slur words altogether and people take a second to figure out what I meant to say. As if I’m drunk or something, at 9 a.m. on a Monday morning in the office.

Forgetting certain words is also common, so I use a lot of “thingy” and “that thing,” getting frustrated when I can’t put together the pieces of a sentence.

All of these cognitive effects from hypothyroidism have, I’m sure, led to some people thinking I’m just ditzy or unintelligent. Especially when I’m trying to have a serious conversation or in a meeting. And that’s upsetting when I was once so switched on, career ahead of me. This gets lost amongst the brain fog now. I’ve also lost some confidence in myself.

Often, my brain is so slow in processing what I’m being told that it actually works a minute or two behind everyone else’s. A few minutes later, I realize what was said and meant and only then am I able to process it and maybe even come up with questions and queries relating to it after the point of everyone else asking their questions. It makes me appear disinterested and unable to even think up a basic point in relation to the topic. It can make me seem like I don’t care about my job or aren’t able to think about the processes and reviews of what I do, unable to contribute to developments and new ideas. I don’t seem switched on or “with it.”

Just as I’m writing this story, I’ve forgotten what the point of the piece was. I’ll come back in 10 minutes when my brain has caught up…

OK, I’m back.

So, the way my health conditions can make me look less intelligent than I really am, ditzy, unmotivated and uncommitted. Let’s get back to it…

The way it also affects my ability to take in new skills and knowledge and hold on to them is also concerning. See, hypothyroidism can cause some brain degeneration and, as well as being forgetful or foggy-minded (struggling to think clearly and efficiently), it also makes learning new things extra difficult. Rachel two years ago was sucking up all the new knowledge and skills I was learning in my apprenticeship, but now I struggle to remember what I already know and have been doing at work for the past four years!

I’m also pretty clumsy, which is definitely linked to the hypothyroidism. Tripping over my own feet, dropping things and generally feeling wobbly on my feet can add to this idea that I’m ditzy and a bit of an airhead. It’s not very professional and actually rather embarrassing.

But one of the worst symptoms to affect my work life is the severe lack of motivation and drive. Some days, I’ll come in to work with so much energy and positivity to get things done. I have lots to do and feel accomplished each time I tick one off, so that drives me. But this isn’t all too common. Most days, I have a severe lack of drive and motivation and I feel so, so low. I’m 23, at the beginning of my career and I can’t think of any work or job that would get me enthusiastic about working and just feel motivated every day. I see friends pushing for new, more senior jobs, promotions and going back to studying to develop their career. And I’m sitting here struggling to put together an email.

Like I say, some days are fulfilling and enjoyable at work, but most days I’m doing it because I have to. And it’s not because of the line of work I’m in, because it’s right up my street on paper. It involved event organization, some admin and being very organized. I love that stuff and I always have. But an imbalance in hormones or chemicals in my body gives me very little motivation and drive most days, where I swing in and out of anxiety and depression, too. This does pass over into my personal life too and I often struggle to find the drive to keep up with housework, grocery shopping and social activities and events. It’s always a conscious effort, to actually do stuff.

I’m nowhere near as energetic, motivated, “switched on” and efficient as I used to be at work. It’s true that a well-managed and treated thyroid condition shouldn’t really leave you with many symptoms, but truth is, managing it can be difficult as there are good and bad days, flare ups and bumps in the road.

And I do worry that, when I spend another meeting with colleagues in silence, because my mind is processing everything at a much slower speed or my mind won’t focus despite me really trying, or I say something silly or slur my words, also dropping a file or two and forgetting to send that really important email, that it will affect my ability to progress in my job and reassure colleagues and managers that I am intelligent and can be efficient at my job.

This post originally appeared on The Invisible Hypothyroidism.

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Grieving for the Person I Was Before Hypothyroidism

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Before 20, the age at which I started experiencing hypothyroid symptoms that really interfered with my life and became a problem, I was an incredibly busy, active and driven person.

I had completed 5ks, had a constantly full diary of social activities and events and prided myself on my spotless home. I would walk two miles to work and two miles back home before tidying the house and starting dinner every evening. After dinner, I’d go to my dance class, go for a run with my other half or catch up on orders and product making for our business, which was run entirely in the evenings. I was ridiculously busy and able to maintain a full-time job, our own small business, the perfect home, regular exercise sessions and a busy social life. I felt happy and fulfilled. I was a regular 20-year-old. I never felt tired and I bounced out of bed in the morning. I was the friend who organized everything and enjoyed doing so. I was always organizing outings, parties and trips. I was like a Duracell bunny!

My future looked bright as I imagined buying a house with my other half one day and starting a family, and I was at the beginning of my career in event management. I imagined being a high-flying mum who did well in her career but was hands-on with her children and was great at keeping an organized home. I’d have dinner on the table at 5:00 and have the kids washed and in bed by 7:00 before putting my feet up for the evening. I imagined that I would feel satisfied with life and would have accomplished a lot, being good at what I did and as efficient as I was at 20.

But then, aged 20, I started experiencing random leg cramps and spasms, migraines and a constant feeling of never waking up feeling refreshed, even after a lot of sleep. After six months of feeling this way and only feeling worse as time went by, I started to research and Google my symptoms. I discovered I likely had an underactive thyroid, despite doctors telling me that nothing was wrong with me.

I was eventually diagnosed with hypothyroidism, Hashimoto’s and chronic fatigue syndrome a few months later, and, while I finally had an answer for how unwell I felt, my life was also about to change drastically.

Having also been told I had adrenal fatigue and that all of these conditions were the cause for my depression and anxiety disorder, I soon realized I could no longer be the friend who made all the effort in maintaining relationships and bore all the responsibility for meet-ups and events. It wore me down and I didn’t have the energy anymore. This was kind of a blessing in disguise.

It dawned on me that I may struggle to conceive and carry children to full-term one day, and I will need a lot of extra help in raising them due to my newly diagnosed chronic illnesses. I won’t be as efficient as I once believed. Caring for someone else suddenly seemed really scary when I was now needing a lot of help myself.

I had to accept I couldn’t be as active as I once was – walking 10 miles a week, playing badminton twice a week, running once a week and dancing once a week was not doable anymore.

I had to accept that my house wasn’t always going to be as clean and tidy as it used to be because I had to learn to prioritize my energy (“spoons“) and I quite frankly didn’t have the energy anymore to spend time every day cleaning.

I learned that my body wasn’t as strong and capable as it once was and that some days I would be forgetful, achey and fatigued beyond words. I’d also catch illnesses easier and take longer to recover from them compared to other people my age. I started missing a lot of time off work. I began living in a world of brain fog and low energy.

I had to learn to mourn the person I was before I developed hypothyroidism, as well as the life I imagined I would have. Everything was going to be different now.

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I’ve been diagnosed for almost two years now, and yes, I’ve accepted how my life and I have changed, with the limitations and many ups and downs that living with hypothyroidism brings, but I do still get frustrated and miss who I once was and what I was able to do. So much more easily, too.

I still find it difficult when I get home and the place is messy, yet I don’t have the energy to clean up or wash the pots and pans. Instead, I have to sit and look at it as I wait for my “spoons” to recharge just a little so I can go for a shower. Because I still like living in a clean and tidy environment – that hasn’t changed – but my ability to maintain that has diminished quite a bit. I’ve lost some independence and the ability to do what I desire. I’m stuck in this shell of a body that is working against me and what my mind tells it to do. What my mind says and what my body does are very different.

I can no longer enjoy a busy exercise routine and only tend to walk these days. When I can manage it.

I especially miss being able to work out a few times a week, building muscle and tone, and the buzz it gave me when I surpassed a personal best. I miss the adrenaline rush and how invigorating it felt to run and play badminton. I miss just being able to do what I liked without running out of energy. I never had to plan my energy usage like I do now.

However, what I do not miss is blaming myself for failing to have the energy to complete my workout, as my hypothyroidism was developing and I wasn’t yet diagnosed. I would beat myself up and tell myself I was lazy. I was hard on myself.

I don’t miss being the sole friend in charge of organizing everything and putting in all the effort to maintain friendships. By no longer having the energy to dedicate to chasing people and realizing it was causing me a lot of stress in the process, I’ve learned who my real friends are, and some have been forced to step up in making the effort, too.

I have learned to appreciate the small things; sure, I’m still a neat freak, but I’m able to leave a pot to be washed tomorrow and the laundry to be ironed another day – instead of freaking out over it and always being on the move, cleaning and tidying. I’m forced to rest more, which gives me more time to enjoy binge-watching a TV show, having a cuddle with my other half, reading books and writing blogs. It’s put a lot of things into perspective and made me realize what is and isn’t important – and people who drag you down certainly are not worth wasting your time on.

I’ve learned that I’m not Superwoman and I can prioritize things better now, although I’m still struggling with this. I often forget that I can’t quite do all of what I used to and I need to ask for help at times.

My life is different and always will be since being diagnosed with a thyroid problem, but I need to learn to embrace this and think about what it’s taught me and how much of a better person I will be because of it instead of what I’ve “lost.” I have grieved for the person I once was and the life I once had, but it was never destined to be that way. Now I have to strive to do the best with what I’ve got.

I have grieved for my active lifestyle, my ability to be efficient, my mind that once worked quickly and clear of degeneration. I have grieved for a life without anxiety and depression (which I am forever slipping in and out of again). I have grieved for my independence and ability to do all that I wish to. I have grieved for my unwavering ability to be exactly who I wanted to be. I have grieved for the high-flying career I know I’ll likely never have (but won’t stop striving for) due to my intense fatigue, slow brain and many other symptoms that make me need time off work.

I have grieved for who I once was and the life I wanted to have.

This post originally appeared on The Invisible Hypothyroidism.

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Thinkstock photo via bruniewska.

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To My Amazing Other Half, From Your Partner With Hypothyroidism

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To my amazing other half,

I know I perhaps don’t say it often enough, lost amongst the bad days, the sleepless nights and sleep-filled days, but thank you. Thank you for understanding that on the days I can’t help with the housework, I don’t have the energy to stand or I get everything muddled up and become frustrated, I’m battling an internal battle and I’m really struggling. Thank you for being there. Thank you for always being supportive. Thank you for understanding. Thank you for being there for me when no one else was.

photos of a couple smiling and laughing

Thank you for doing the dishes when I don’t physically have any energy to stand and thank you for relentlessly doing the ironing when my brain fogged mind can’t figure it out and I get mad at myself. I appreciate every single little thing you do for me. Even if I don’t always show you.

Thank you for the countless leg and foot massages when I’ve had a really busy day and can barely walk anymore. Thank you for aiding me up the stairs when I need the extra help.

You often notice I’m struggling before I’m even aware and you swoop in like the superhero you are, coming to my rescue.

I appreciate that my health conditions have not just put me through a hard time, but you, too. The days I haven’t been able to complete certain tasks, you’ve had to take on more – housework, cooking, running errands, organizing things, etc. You’ve had to be an unfaltering pillar of strength, repeatedly holding me and telling me that we’re going to work through the tough times and come out of it stronger. While I’ve been a collapsed mess on the floor and you’ve been going through all kinds of stress, frustration and worry yourself, you’ve always remained calm, strong and clear-minded. Whereas I have you to vent all of my emotion to, you haven’t done so to me, concerned that I have enough on my plate as it is. You’re always considerate. And sometimes our life and plans have to be put on hold due to my health conditions.

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I know it’s crap when we have plans or are invited to an event but can’t go because I’m having a bad day with my health. It sucks that my health conditions affect you, too. But you never make me feel like I’m at fault; instead, you fetch me a hot water bottle, my favorite treats and put another season of “Friends” on again. If I’ve ever needed time off work due to my health, although you encourage me to go whenever possible, you’ve never pressured me when I truly couldn’t attend. You always encourage me to rest and take time for self-care. You help keep me in a routine that promotes self-care.

We’ve spoken about how my health problems may affect our future plans, including starting and raising a family and me being able to work going forward. We’ve talked at great length about my ability to do all these “normal” things other people do without too much of a thought and we’ve made plans. We’ve worked through it and you’ve supported me.

People sometimes say to me that I’m strong, inspirational or selfless. But in all honesty, you are all those things and more. It takes a very strong person to care for someone who sometimes cannot care for herself. We often live the life retired couples do and we’re only in our early 20s. No one understands how difficult this can be for us. You’re inspirational in the way you never falter to put others first. You selflessly come to many doctor and hospital appointments and you’ve spent hours with me researching treatments and new things we can try to help me get better.

You’ve supported me in my endeavors to complete a 5k fundraiser, standing right there beside me – literally. You’ve helped me source new medication and resources to help me make progress. You’ve always been supportive in us paying privately for any testing we thought was needed to get a more comprehensive view of things. You even encouraged me to set up my blog to share my experiences with others.

And I read about other thyroid patients who have partners who question the validity of what they say they’re going through, don’t help with the housework or things they used to do or even call them lazy. And I feel so fortunate that I’m with someone who has never once questioned me, doubted me or made me feel any worse than I already do living with this chronic illness. You still look at me with adoration and you make me feel like the most special person on the planet. When I gained weight from hypothyroidism, you put all my worries about looking bad at ease, as you still looked at me in the same way you did when we first met. You still treated me like a princess.

man and woman laying down next to each other and laughing

I cannot imagine how hard it is to try and console your other half on days when they’re crying because the pain, fatigue or frustration is just too much to bear. I cannot imagine how much you must have worried over the years when I’ve been in hospital, sent for more tests or am trying another new medication. When I’ve been frustrated or angry with doctors or other medical professionals, I can only imagine how frustrated you must have been, too. Being the person stuck in a failing body with, sometimes, no light at the end of tunnel is one thing, but being their significant other who wants nothing but for them to be happy must be heartbreaking. I’m not sure what I would do if it was the other way round. I’d feel useless.

But I hope you know that you’ve been nothing but amazing this whole time. You’ve been encouraging, supportive and unfaltering every step of the way, and that is the sole reason I am still here today. People ask where I get my determination to keep on going in the dark times, and I tell them it’s from you. Without you, I know I would have given up a long time ago.

I want you to know how much I appreciate you and every little thing you do. Every single day. I am incredibly lucky to have you in my life and I love you more than any words can even begin to express. I cherish the memories we make together, good and bad, because in the end they’re what make us, us. You deserve a medal for what you continue to go through with me, consistently standing proudly by my side as we hit another bad patch in my health and holding hands tightly, ready for the next test.

Thank you for taking this journey with me.

Forever and always,

Rachel xx

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This post originally appeared on The Invisible Hypothyroidism.

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