Here we go. I wrote this little more than a year ago, on July 27th, 2017 and didn’t dare to share it til now. And whatever it is that makes me do that now, I hope this post can do some good in the world. Maybe shed some light on chronic disease and their mental implications for you. Maybe spread some awareness of hypothyroidism or make you more sensitive towards the restrictions of other people around you. Maybe you can relate and I’m here for questions, of course.
Since I did write this a while ago, not all the statements I made then may conform with my opinions now and current world view. I know now, that my body dysmorphia hadn’t completely left me then and still hasn’t and might never do so but I’m fine with that.
I hope this doesn’t hurt anyone, and if it did, I am very sorry and I’m here to talk. Anyway, please take this with an open mind and heart and an awareness of just how vulnerable sharing this might make me to you.
(yes, I know it’s not perfect yet but I was to tired of reading it over and over again to erase every last one of my mistakes, so just roll with it :))
This is not in any way written to carry a sad tone and in no way a reason to develop any pity for me. It is simply a dry way to structure and share my understanding of my chronic illness which I came to recently in such an extensive and comprehensive way. If you are bored of my posts hovering around my personality, self-questioning and chronic disease, don’t read the following one; it’s another one of those (more medical-based though and less pointless dwelling on melancholic feelings).
A couple of years ago I thought it would feel better, if I could put a name on my condition. Because then, so I thought, I would be able to explain to people what was wrong with me and justify my strange diet. Then I would sound legitimate when I had to tell people that I was not well enough to attend an event because I could just throw out a Latin, medical term that described my condition and everyone would understand.
All these years later, I have been disappointed by the moment I found out what they call my condition. Even though it was kind of a relief to get to know that it is not all in my head and imaginary (as some doctor suggested), it failed to be an answer that goes beyond me knowing the two words that make up its name.
And it has captivated me so beautifully.
When I was twelve years old, I first started thinking that I was too chubby (I was not, which as a fact has no relevance to what I felt but might help with envisioning the following description and getting the facts about my symptoms right). I remember starting to be aware of what I was eating and feeling ashamed of my body, leaving me with deteriorating self-confidence and acceptance of my own being. Then, as if planned by somebody, when I was thirteen my joints started aching, stiffening and swelling. I felt the pain but in retrospect I believe that the pain wasn’t what hurt and impacted me the most. I believe it was the people around me talking about my body, talking about the puffy appearance of my ankles and my swollen fingers. I do not blame anyone and I know and knew that all those words were not meant to hurt me. But they hit. Deep inside, somewhere where I could feel it in my heart and where they turned into a truth that went „My body is wrong. It is ugly and broken and I am to blame“ (even though I always knew better in a rational way (I think)). I tried to be strong, and I didn’t even have to try to hide the way I felt because it was so natural, a guilty feeling only to be known of by me myself.
Next, equally, if not more beautifully placed in the history of my burdens came my moonface. I don’t exactly know when it appeared, but it made my insecurities complete in the most fascinatingly cruel way possible. From what was a normal child’s face mine changed into a round ball of chubbiness without the slightest sign of my chin, swallowing the lower half of my face and leaving two smaller-looking eyes swimming as if lost in a lake of edema. Now, the beauty of this lies in the intricacy in which I perceived it and in which it therefore hurt me. I myself, to be honest, could hardly see the change in my face up until a couple of weeks ago when looking at photos from last Christmas. Looking into mirrors in places with bright light all around, staring straight into my eyes my face didn’t seem that different. So I heard my family comment on a facial change to the uglier without really comprehending it myself, but once again buying the truth that seemed to be inherent in it: I was wrong, wrong in a chubby, puffy, bloated way. I learned that when people see my face they see a sickness or maybe just an unsightly face and I became uncomfortable when people looked at me. But my face’s pain went further than that. I can feel the thickness and doughy swelling of my skin and the aching in the area under my chin with the swollen lymph nodes just as I can feel the sluggishness and uncomfortable tightness of the edema-pads covering my shinbones. I grew up, which meant meeting new people. People that had never seen me without my puffy face, people that were not able to recognize the swelling I had and didn’t believe me when I told them. And when they told me that they didn’t see the edema I knew that when they looked into the face of my disease they thought they were seeing me, and that made me sick.
I tell you, someone very smart must have constructed this condition for me, because the way in which it completely disabled me to function properly doesn’t end here.
To battle the symptoms no doctor could provide me with a reason for, we went for the only thing that was left to us to change: My lifestyle, specifically my diet. Now it wasn’t about the amount of food at all (although that was my private concern nobody else knew about) but about the things that I could avoid to improve my condition. And so I did. I was already vegetarian but so I went vegan to reduce the inflammation in my joints. I stopped eating gluten for the same reason and avoided many more things I didn’t get to try for their impact on my body before I went off to boarding school. Now maybe you can imagine how this kind of restriction might have added a layer of confusion on top of my mental battle with my understanding of my body, while being exiled out of the school sport classes onto the bench, not able to participate due to my inflamed joints.
And it also added the social aspect. It singled me out when everyone was eating food I couldn’t have, put me in a position to explain my diet and made me loathe events where people would eat together because it reminded me of being sick, had me feel guilty for eating if I could eat anything (which I shouldn’t do because I thought it was the way I made myself sick) and made me feel as if everyone around me was judging me on what and how much I ate because of my sickness or my chubby appearance. And through all that, you are expected to reply kindly to offers of food, to decline them politely and with a positive attitude that would make me cry on the inside (really, that is how it is, I have experienced so many of these situations). Because you can’t be the grumpy one ruining the anticipation before and the fun of a house-pizza-night, right? You have to gracefully abstain, with a smile on your lips because it doesn’t hurt at all being the only one not eating. Sometimes that could make me scream in anger. I am sorry, I couldn’t always hold that smile up during house events and left, I am sorry I got tired of cooking for myself for some other event or voted against having some sort of dinner/icecream/snack,… (Okay, to be honest I am not sorry for feeling the way I do when being left out because that is about as much dignity as I do have left. But saying I am sorry is a diplomatic choice here following the same principle as with forcing myself to smilingly decline food instead of being the sad/grumpy/hurt person ruining the event for everyone. I pretend to be sorry to advance noble and humbling feelings that will make you empathize with me and make you (want to) understand me better than if I came off as gruff, selfish and cold-hearted even though there is little to no sweetness left in me to do this apologizing and polite declining in a sincere way (and yes, I also know you’re not to blame for the fact that I can’t have that pizza and that I feel bad for not being able to enjoy the event)). And no, I also don’t want the extra-meal you make for me and that I can’t decline, unless I am very comfortable with you (actually sorry for that). Because it will put me in the imaginary spotlight again of me thinking that I publicly contribute to my condition by eating the meal.
Not only eating with other people became more difficult. I was a shy kid, as you probably already know because I like to melodramatically write about that, and now that I felt so wrong about my body and the things it was doing it became even worse talking to and interacting with people. The bad feelings and brain fog that impaired my concentration turned me into a not-so-entertaining person to talk to and performing my best in school (nagging on my self-confidence again because I had always defined myself by my mental abilities and sharpness) my fears prevented me from reaching out and feeling worthy of other people’s attention.
I felt uncomfortable with other people because I thought they were judging me on what I look like. I started disliking others touching my body and felt exposed when doing something in other people’s presence (Notice how I inadvertently switched to present time when writing the next couple of sentences). I hate preparing food and eating because I think that people think that that’s where my puffiness comes from. There is not a single meal I eat and not a single bite I take without thinking that I shouldn’t eat it. And I know, that it may sound like I flatter myself with too much attention payed to my actions and appearance from other people but this, ridiculously, is the way I feel. I felt like a disappointment to the ones around me and as if I meant a down in the mood for everyone around me.
Now, I tried. I tried so many different doctors even though I hated going to them because I was afraid that they would tell me what I suspected to be true: that it was just all me, imagination or my inability to eat less that made me look the way I did. I stuck to the inflammation-reducing diets a hundred percent, I went running and worked out every day, drank three liters of water daily and abstained from anything that would harm the body that was harming me.
And this is, why knowing that I have myxedema caused by hypothyroidism together with many of the symptoms an underactive thyroid can cause doesn’t make it any better.
Because back when I thought a diagnosis would already mean the world, I wasn’t that tired of the symptoms yet as I am now. Because I wasn’t on thyroid hormones for 1 1/2 years already (after repeatedly having elevated TSH blood levels for years) before I got the diagnosis including the myxedema while now knowing that thyroid hormones are the one thing to juggle with with hypothyroidism and that it can take years to get the dosage correct and the symptoms to disappear. Because I knew my diagnosis before any doctor (from research on the internet) and remained the only one until I finally got to a doctor (about two weeks ago maybe) who had enough knowledge of the illness to recognize of all the symptoms of it that occurred in me.
Because telling people I have hypothyroidism doesn’t make for a legitimate reason for my shortcomings. It makes them go „Oh but you just take a pill every morning for that and it is fine right?“ or „That is that thing where you’re just tired all the time, right?“ and doctors think pretty much the same (not blaming anyone here, once more, just stating my experience). It is the condition of middle-aged women (not teenage girls) that they think is managed by balancing a single hormone level (TSH) according to my blood levels by the intake of a single hormone (T4/Levo-Thyroxine) and that to the knowledge of most doctors I met doesn’t cause edema while I know (after extensive research) it does. And I also know, that many people who experience edema with hypothyroidism aren’t helped with only taking T4. In reality, it is one of the diseases you have to fight with your doctors over to get you the right treatment (so hard when you doubt the existence of your condition yourself after so many people telling you it’s not real) and one that makes believing you’re actually sick very hard because, hey, it is just a pill every morning, right? Now, I’m not asking for a disease that actually makes people have respect for you just by hearing you have it. I am insanely grateful for not having an illness which’s symptoms and treatment in severity go beyond the ones I experience now. But I do think it is important to get this feeling as well out there so that more people understand that you can’t judge a book by its cover; or in this case its title. What’s going on inside a person with chronic illness is not determined by how severe society thinks the diagnosis is. It is simply determined by the person them self and the way they feel.
I can’t find many other stories of people with myxedema to relate to and the common belief is that it is a very rare symptom today, so that it is given little care on the world wide web. I don’t know what I can do to help myself except for getting doctors to support me so I can experiment with the hormone dosages (which is another adventure because the next endocrinologist appointments (if any) are available in February 2018 if I am lucky). And after all, the diagnosis and the fact, that mental health issues are one of its common symptoms don’t change the content of the thoughts I have just because I know their source. I know, now I’m starting to whine because how could anyone expect to just have everything resolve by simply finding out what it is that makes them feel so bad? So let’s not go into that, I just had to put it out there to do my current feelings and thoughts justice.
But call me ungrateful and impatient for not feeling better for knowing my condition’s name, I do not care.
Because I can bear seeing photos of myself even less than I did a while ago when I saw them through a lens of dysmorphia (changing the way I saw myself in some bizarre way to the chubbier while at the same time failing to see the puffiness of the edema for what it was), which resolved but left me with the vision of reality of just how much my face is that of my disease, a territory conquered by the myxedema that left me with undefined puffiness and dull eyes that silently scream discomfort.
In case you wonder (and also in case you don’t), why I haven’t told anybody about this is simply because I’m scared. I do not want to become the object of your pity or the damaged person in your worldview. I know that you look into my face thinking it is me while unknowingly seeing my illness which makes me uncomfortable but what if you look into my face and all you see is disease? What if I become „the hypothyroid girl“ or the one with mental health issues whining about life? I know how it feels to have people not understand you because they can’t due to lack of knowledge about what is going on inside of me. But I am scared of people misunderstanding and mistreating me based on the knowledge I gave them about my condition which suddenly becomes this big awkward thing between us. I do not want to turn people who only I think think about me eating into people who actually do think about me eating because I told them I have an issue with that. I follow the diet I adapted out of motives of hope for improvement of my condition and every new twist I try is not to be put to your suspicion. When I decided to do a water fast, I did so in hope it would give me some relief with my symptoms (it did!). When I decided to leave out soy again I did so because on the instruction leaflet of my Thyroxine pills it is stated that soy negatively influences the thyroid. When I decide to leave out sugar I do so because every time I eat candy my joints hurt like crazy the next morning. When I refuse to eat something do not doubt me. Do not try to make me eat it anyway or convince me that a single time wouldn’t do any harm. Maybe not to your body, but mine is different. It is just hard enough for me to turn it down, making me feel different and singled out so don’t challenge the courage I just executed by making me defend my way of protecting myself from pain. And please, do not (and especially not repeatedly) ask me what a bread/cookie/slice of cheese… would do to me if I’d eat it, waving the said thing in front of my face, loudly wondering „would you die?“. I flatter myself with usually having a decent kind of humor (though a bit dry maybe) but I’m (not) sorry to tell you that I do not go in for hurtful jokes about my restrictions.
See, I don’t want anyone to worry or think worse about the past years of my life. I don’t want to make anyone cry or run up to me having to give me a hug, I don’t like that and this is really not the kind of response this post is meant to provoke (I worked very hard on trying to get the tone as neutral, objective, observing and matter-of-factly for that, don’t make me think I failed ;)!) I just would like you to take notice. No more, no less. Giving you an opportunity to understand me better if you wish to do so. And because it can get hard being caught in the same spirals of thoughts for ever more and more alone, wondering if they really exist and are justified outside your own little world inside your head.
P.S. If I ever get to deliver a vagina monologue or Ted-Talk or anything like that, now you pretty much have a good idea of what it would be like, I guess.
P.P.S. And ironically, I am still not able to share this.