My Invisible Illness
I deal with and have dealt with a few, unseen but very much felt, illnesses in my life, anxiety, and what is commonly understood as depression. So In my 34 years I’ve known what it is like to be so unwell on the inside but look like there’s nothing going on, to the outside world. What I didn’t know is how some of those mental illnesses were caused by another issue completely. Some of these are misdiagnosed to be something they can easily be placed as, a common or easy diagnosis is often wrong. Instead of being the diagnosis, these illnesses should be symptoms of, caused by, or seen as a red flag for another serious underlying condition. Day to day we tend to put our own sickness and pain and sadness or worry into separate boxes, mental or physical, and I made that mistake my whole life.
What I have now, is something I would not wish on anyone. Everyday is a worsening symptom, a new ache, a new pain. I’m constantly worrying or rushing or hurrying, I am always on the flight end of fight or flight syndrome. My hands have slight tremors. My muscles spasm from nerve issues, my hands and toes go numb. I can’t sleep, even with kids where you survive on a few hours and cherish the nights you do get a solid stretch of sleep, I physically cannot shut off and doze off. I cant gain any weight, I continue to lose weight though. I’ve lost in total 108 pounds in 2 1/2 years. I’ve lost so much weight so fast my face looks sick, my eyes are sunken in, my cheekbones extremely prominent. I don’t like how thin I am. I’m always defending my drastic weight loss, like it’s because I don’t eat or I’m on something. I’m dizzy and clumsy, and I cannot focus. My periods are abnormal, and with three kids under 5 and not wanting to expand, you want to be damn sure that you don’t unexpectedly miss any periods, so that gives my anxiety and panic a lil boost every month.
Then there are days that I am so physically exhausted, so drained and tired I can’t get out of bed, and I thank God for my husband and that we work from home. My husband takes our three children and lets me sleep on those rare days, and I sometimes am sleeping so hard I wake up at 8pm. Those days are the hardest, I have explained them the only way I know how, I feel like I’m dying. I fully understand how Blessed I am to not be, dying, but that’s the only way I can explain the severity of it, how horrendous I must feel to put it in comparison with that. My back hurts, my bones hurt, my eyes are heavy and burn. My brain is a fog. My nerves send shocks throughout my body like fried wires. I feel like it’s because my mind and my nerves (and metabolism) are on such high speed all the time that on those days is when I crash. And everything catches up to me. Even though I feel like I don’t have an ounce of energy and can barely tolerate going through the motions of a normal day, if I didn’t have those days I might just lose my mind from the constant anxiety, panic attacks, nervousness, worry, hurried thoughts and words and insomnia. My mind and my body feel like I am a speeding train going going without any stops on a cross country trip that crashed into the ocean at the end of track, doesn’t stop, just goes over the edge when it’s at the end of the line.
When I was a teenager I was misdiagnosed with manic depression (bipolar disorder) I was treated with intense medications that never ever worked. My symptoms were no where near what I have today I had some but not as intense, but close enough. And to most doctors everything I described and even to myself doing research on bipolar disorder, made sense as to why they would give me that diagnosis. But no combination of medicine worked, for 10 years different antidepressants and antipsychotic mixes, stand alone bipolar disorder medication, nothing helped. Nothing made my anxiety better and I really didn’t understand that “mood swings” and bad PMS were not really in a normal correlation with a depression diagnosis but at the time I was like yeah I have big ups and downs, that’s what I have, ok. Really it was just bad bad anxiety. Some antidepressants made me much much more anxious actually. So I would stop them, nothing changed with stopping the medication either (except the zombie personality, that came and went with a few specific meds) and a year later I’d get overwhelmed and unable to cope and start something else and so on, sometimes an anxiety specific medication. Sleep aids, sedatives. And the self help of
Coronas, tequila shots and redbull vodkas (ew)
At the same time as my misdiagnosis, my early teens into my 20s saw other health issues. I had ovarian cysts which were the size of oranges, and uterine fibroids. I had a surgery to remove 14 large fibroids when I was 19. I was actually told that I may never have children because of these problems. (3 babies and no problem conceiving proved THAT was a lie)
Never did I think that any of these things were related to my anxiety, or “mood swings” I didn’t even put them in the same category, this was this and that was that. Unless PMS but who the hell doesnt have that, amiright? My mind and my reproductive system two totally different types of broken, right? Wrong.
When I had my first son when I was 29 I was 225 pounds. I was completely content with the size I was though, I was never in a big hurry to diet, I didn’t feel uncomfortable being that heavy. I just was happy, all around. I had a husband who loved me and a brand new baby to focus al of my attention. About a month after he was born though, in the middle of an average day, for no reason, no triggers, my chest started to get heavy and tight, my hands went numb, then the right side of my face, I felt like I was going to pass out I couldn’t breathe, I was getting tunnel vision. I was so hot, I’m spinning. I yelled for my husband I thought I was having a heart attack or a stroke. He put the baby in his car seat threw the stroller in the car and rushed me to the ER. I laid in the hospital bed while my husband walked outside with our newborn in the stroller. They ran tests, MRI, EKG, the whole thing, and I was...dun dun dun..completely healthy. The doctor came in and gave me a pill, an Ativan, and began telling me how a lot of new mothers go through post pardem depression, but it’s also very common and not really talked about separately, to have post pardon anxiety as well and stand alone. Well my anxiety had never felt like that in my life or caused such an intense fear in me that I raced to the hospital. I have had anxiety attacks but never so physically scary, that was a terror panic attack to say the least. They said because I had a first traumatic birth experience that it’s how my brain was well coping, I guess. They didn’t tell me, that there are other things that could cause a panic attack like that, or that a postpartum condition, a hormonal one, can be an underlying cause. Also extremely common within the first few months after having a baby. Nope. They kept me a little while longer until I calmed down indefinitely and sent me home to follow up with a doctor for my anxiety, I left embarrassed but honestly so confused as to how physically intense that was. But with the birth of my second son all of those questions were finally about to be answered and all of the confusion put to rest.
I had already begun to lose an insane amount of weight in the first year of my oldest sons life. (60 pounds) The next year brought so much new I had no time to think about my racing mind, life was racing right along with it. I started my own company, I had a whole new priority along with the huge responsibility of helicopter momming my first little boy. I don’t even think I realized how bad my anxiety, insomnia and “mania” really were because I didn’t stop, so none of those things hindered me, they helped me if anything. But they were getting worse.
Late in the year I had a miscarriage that absolutely broke me. That was the depression I had, the only time I had really felt that way honestly, I was always just used to being nervous and worried but never sad or hopeless or empty. I was unmedicated and decided to stay that way because I wasn’t allowing any more medicine to try to fix myself or mess with my mind when it wasn’t helping. It was normal to feel this way when experiencing a loss and I was not going to feel ashamed for that either. All around me were lives that I needed to be ok for. So I stuffed all of those emotions inside and I mean stuffed like vacation wardrobe for 5 people in one bag and kept on going. Three months later I was blessed by getting pregnant again. My rainbow baby boy. Not very long in between and not enough time for me to process grief and except insane joy. And not enough time for them to notice my hormone levels. I had a healthy second pregnancy but could not gain much weight. The doctor said that was a blessing, most woman would love that problem. I was worried. But I’m always worried, so that was the end of that. Stuffed that worry in with the rest of those emotions.
Two months after the birth of my second son when I was 32 years old, the same intense panic attacks retuned, along with more dramatic weight loss, I had lost all of the very small amount of baby weight, then another 30 pounds in 60 days. My eyes were black underneath, my hair fell out, my face was grey. All of this to anyone around me was just from having a new baby and a toddler running around. Oh you’re just worn out! I began having severe headaches, I looked bad, and to myself scary. Why wasn’t I happy? I had my second baby and “bounced back” skinnier than ever and I’m always panicky, of course I would blow this out of proportion. One night, after I’d gotten everyone to sleep, stressed out from things I didn’t get accomplished from the day, my mind still in overdrive, I was sneaking a cigarette (bullshit habit I’d picked back up) I stood there, inhaled and hoping that when I exhaled I’d somehow feel relief, or relaxed. Exhaling, I stretched my neck, my head upwards as I blew out the smoke, and I randomly ran my hand down my throat.
“What the hell is that?!” I yelled out loud to myself. Panic. Fear. A massive lump right at the base of my neck. I had not felt that there before, how didn’t I notice this? It’s huge. How did something this big just appear. I flicked my cigarette and ran to the basement bathroom stretching my neck in the same way looked in the mirror examining myself. Shit you can see this thing, when I swallow it moved up and down. That was the night I found a mass on my thyroid and the one massive piece to my puzzle of illnesses. If I had not found that lump, I would have not gotten the tests done and would have not been diagnosed with hyperthyroidism.
The mass on my neck was biopsied and is benign, it is not going to kill me, even though I’d prepared for the worst. It is actually something I’m so glad I found. Because it being there made them check my thyroid levels, showing them that I had hyperthyroidism, (which is an overactive thyroid. In my case, very overactive) My thyroid levels are much higher after the birth of each child then just a little better as the pregnancy hormones leave my body, but my levels are always high, I always have an overactive thyroid gland. And do you know what the symptoms are for that, for this (for the most part) invisible illness? Feelings of Anxiety, Insomnia, weight loss, tremors, mood swings, irregular periods, heat intolerance, rapid and fluttering heart beat. It controls your metabolism and nervous system. Yeah that was all new news to me. Do you know what else it causes? Your likelihood for ovarian cysts, and fibroids like I had when I was younger. All part of the thyroid problem I never knew I had. This small gland over working and producing too much hormone caused me so many separate problems, that I never would have tied together. And had that gland not overproduced so much hormone it made this mass, I would have not known that there was something I could do to FIX all of the problems I had when I was younger until now. By just fixing my thyroid. It’s not an easy fix, and it’s not the same exact way for every person so it’s a long road to getting the right medication.
I got pregnant very fast after the thyroid diagnosis, my middle son was only 4 months old. I was concerned that if they chose to do radiation as my treatment, I would not be able to have anymore children, and I wanted more. I was so afraid if then not that iodine radiation, and a removal of my thyroid or I started the medication for my thyroid it would somehow make it hard or impossible to naturally get pregnant again. So we tried and the next month I got a positive pregnancy test. (After speaking with two endocrinologists one of which is also an OB, I was better informed and told there would not have been any real issues had I started my treatment plan right away and I would have been able to have more children in any of the routes chosen)
My pregnancy with my third was so horrid and I was so sick and in so much pain, and had so much panic and overwhelming feelings I was a basket case. In my head. I still had to be a mom, run a business and grow a human. But I was going through hell mentally trying to stop my brain from going 24/7. I kept busy but was so worn down, I rested my body as much as I could in my third trimester when it was the absolute worst. Still I could not calm my mind, and the pain and muscle aches began to be a constant, not like normal 3 trimester aches and pains, full on I can’t walk pain..I looked terrible, I was embarrassed to post pictures of myself and growing belly because while the baby was growing perfectly and healthy, I couple not gain weight. I was embarrassed I felt I was always defending myself because the rest of me was so skinny and my face looked so tired and old and sunken. I felt like I was dying but I was taking care of myself well. I ate so much I walked as much as I could tolerate to get fresh air, always took my vitamins, I stayed away from all the bad and over did the good. The baby was healthy. I was, apart from this but I felt like I was wasting away, and looked like beetle juice by the time I was 8 months. Not. Even. Kidding. The overactive nature of my thyroid and whatever hormones it over produces reek havoc on you, in so many ways you would not even know possible, but at the end of a pregnancy this was scary. And pregnancy hormones combined were for me like someone sucked the soul from me, I imagined it like the opening scene from Hocus Pocus. But I wasn’t having my youth breathed in by a trio of witches, I was supposed to be creating a small human being, and I was doing damn near anything possible to make sure he was ok even when I felt was not ok.
I gave birth 3 1/2 weeks early, in a precipitous labor, (9 min total!!) The minute he was born I swear the color retuned to my face, no dark circles under my eyes, my skin and entire face went from crypt keeper to normal crazy mom in the next day. It’s like everything I had in me the last month pregnancy that was supposed to keep this third time mama plumpy and glowing, finally had a chance to stop fighting off the hyperthyroidism, fighting so that my babe could thrive, was now after birth able to do what it’s supposed to do and give me life. My son was early but he was 6 pounds. I don’t know how, but if I didn’t have him earlier I’m sure I would have died. I could not handle another 3 weeks and not because I wouldn’t give up but because my body would have. My body was not able to create and protect a new life, and also take care of his mother because it was so depleted. I had been pregnant for two years with the miscarriage second and third babies. My body was not metabolizing food properly, I wasn’t gaining weight, my body wasn’t putting back into what was being taken out all because of this thyroid disorder. And my mind was racing, running on overdrive the whole time never being able to fully rest. I’m blessed I was able to carry and deliver a third and healthy son, even if it sucked every ounce out of me, literally. It wasn’t like anyone told me that it would have been so hard, no one took my concerns too seriously. You don’t know what this thyroid disorder, or any illness like this can do to you mentally and physically. Also no one told me how pregnancy can amplify that or for some woman bring it on entirely. I was not given enough information or correct information and I think if I’d been warned or given a heads up, if I’d have known to ask better questions or heard other stories I could have better prepared myself. This is nothing to be taken lightly as one little gland can take you down. It effects so much of you, mind, weight, nerves, muscles, eye sight, sweating, reproductive system, the list can be longer if left untreated longer.
I couldn’t until now, 6 months after my third son start the process to treat my hyperthyroidism. And the symptoms have gotten better and worse then ok then the worst they have ever been in that short time. My blood tests were different a month apart, but the problem remains the same. And I’m still losing weight. I now have to have even more testing, more time, then more blood work, then a series of testing, all so my endocrinologist can give me the right treatment plan, right dosage of medication. All while my old symptoms are raging and new ones have arrived, I at least know, I have a solid reason and diagnosis of why all of these things are happening, it makes me feel like there is an end, and I don’t think I’m crazy or overreacting, I don’t think I’m just always worried anymore, because I have a reason a solid and undeniable diagnosis that explains it all. Everything I couldn’t not fix was caused by this, hyperthyroidism. My misdiagnosed bipolar disorder, the anxiety I’ve had my whole life, mood swings, painful and irregular periods, cysts, fibroids, shakes, heart palpitations, insomnia my hand and feet numbness, muscle spasms, involuntary movements, dizziness, vertigo, light sensitivity. All of the things I suffer with and the things I’ve suffered from in the past that I didn’t know were all due to this one common disorder. Some people have hyperthyroidism and they never know, because it doesn’t effect them or they are effected severely due to the thyroid levels not being that high, some don’t realize that it’s their thyroid causing so many problems because they were never tested or their doctor didn’t think to test them. How many woman give birth and have Postpartum Thyroiditis and it’s causing their anxiety and effecting their metabolism and moods? I used to think an endocrinologist was the same as an herbalist before this and was quite taken back with how much your endocrine system controls everything head to toe and how important it is for us to have that checked. It’s often misdiagnosed as something else. It’s sometimes even made to be not anything, not bad or completely fine, by family doctors who don’t really know that well, when you’re tests don’t show a big difference from normal levels, but your body is reacting to the very small amount terribly. You, until you are on the other side of a diagnosis, feel lost and uncertain as to why you feel this way and it’s terrifying. You have done everything you can and nothing is working the way it’s supposed to be, and you give into just living sick, because no one believes you or understands. If it wasn’t for the 4cm thyroid nodule I found in my neck I would have never known and I probably would have never in my life known. I wouldn’t have had the peace of mind in a diagnosis that brought all of my unfixable issues and put them into one category, and said it’s all going to be fixed together with one treatment. No, it’s not a cut and dry diagnosis with one medication, it’s an illness that fluctuates, that I cannot guarantee how long it will be until I get better but I know that I will get better and that’s amazing. I will always have this, I will probably always have to take medication, and I can accept that knowing that I finally know what it is that I have.