If you haven’t noticed, there is a link at the top of my site for Hashimotos Awareness. This link is there for a few reasons:
- Several family members, including myself, have been diagnosed with this disease.
- It is incredibly common in women, and many won’t realize they have it as the 300+ possible symptoms can easily be dismissed as age catching up with us and any number of potential ailments of varying severity.
- I know how long it took me to feel the way I feel today, and I wanted to share my path with others who are trying to navigate their way toward health.
Today’s post is not going to revisit everything that I put on that page, but as a reflection of what it is like to live with a chronic illness for those who don’t have one. First let me start with a story, from when I was first diagnosed.
By this point I had three children, and certainly I was no spring chicken any longer. However, I could sense something was not right. I was not recovering from this last child like I had the previous two pregnancies. I was exhausted, all of the time. I mean literally all of the time. Physically, mentally exhausted. I couldn’t seem to function like I once had. My energy was gone. My brain was clouded in fog most of the time. My memory was a fragment of what it once was. No matter how much I watched my diet or exercised, the weight was packing on.
I mentioned this to my obgyn, who did a blood test for thyroid disorder because she herself had a thyroid disorder and recognized some of the symptoms. Nothing alarming came back. We figured I just needed a bit more time, being older… three kids… made sense. A year later, I felt worse and this time the thyroid blood tests indicated I should see a specialist. Within just a couple of weeks I had my diagnosis of Hashimotos Thyroiditis.
I remember feeling such relief that I had a name for it, and a treatment plan. A treatment plan, which according to my doctor at the time, would run the rest of my life. Over time my dosage of medications would be adjusted to compensate, as my body actively works to destroy my thyroid. Hashimotos is an auto-immune disease in which my body attacks the thyroid as if it is a foreign invader.
I was excited to see how my life was going to improve with this treatment plan. I remember sitting at a coffee shop with a friend and as I started to explain my symptoms and my diagnosis… she cut me off.
“You are just getting old.”, she said with a laugh.
This would not be the last time someone would try to dismiss or normalize the symptoms of my disease.
“You do have three kids now, of course you are tired.”
“You are just making excuses.”
“You need to exercise more, and eat less.”
“Sometimes, when someone begins exercising more frequently they think they can cheat more often on their diet.”
“You don’t even know what tired is, I have…. “
“But you look fine.”
It is so infuriating to have an illness which can literally control your day to day living and have someone else dismiss as nothing. I once spoke with a woman who has Hashimotos and she told me:
“I wish I had cancer. At least then people would believe that I am sick.”
Think about that for a second. When have you ever heard someone wish they had cancer? But, I knew all too well what she meant. When you have a chronic illness, it’s also usually called an “invisible illness” because regardless of how you feel you look just fine. Not only do people get tired of hearing about your illness, you get tired of talking about it too. Eventually you stop, and just respond with a cordial “fine” when someone inquires about how you are feeling or doing.
You don’t want to hear another audible sigh, or watch another set of eye rolls from those you call family and friends. You don’t want to hear your symptoms dismissed because of your age or growing family, when you know your own body and this is not how it works. Nor do you want someone to tell you that you are going to have to accept this as your new normal.
I remember working out 5-6 days per week. Yoga. Zumba. Gym membership. Curves. Personal Trainer. High Impact Training. Body Combat. Walking. Biking. Weights. Running. I remember working with nutrionists and trainers on my diet. Protein shakes. Energy boosters. Fat blockers. Keto. Paleo. Atkins. Weight lifting diets. Custom diets removing certain foods. In one blood draw trip I gave nearly 20 vials of blood to test my thyroid levels, hormone levels, food allergies, vitamin/mineral deficiencies.
Yet, I wasn’t feeling better. I kept feeling worse.
Imagine sleeping a full night and never feeling rested, but instead exhausted.
Imagine your skin hurting to the slightest touch that it would feel like serrated knives being drug across your skin just putting on your pants.
Imagine having your body ache like you had an amazing gym day the day before, and the reality is that you physically haven’t been able to get to the gym in weeks.
Imagine that just taking a hot shower will wear you out to the point that you need an hour nap afterwards.
Imagine that despite all your efforts to work out, watch your diet, and take your medications result in your weight going up, your body swelling, your hair falling out, your skin drying out, and so many other little things.
Imagine forgetting important dates, even when you right them down. Losing everything because you really can’t remember where you set it down. Telling the same story over and over again because you truly don’t remember telling it the first time.
Not getting better, getting worse, and everyone just dismissing it because of age. I was thirty three.
As someone who has battled this for 7 years, let me key you into a few things.
I am as annoyed and inconvenienced as anyone by my disease, more so in fact. I don’t want to talk about it anymore. I don’t want to blame my illness for my lack either. But, more importantly than that the things I needed the very most was for people to simply BELIEVE me. Believe me when I say that I have an illness that I have no control over. An illness with no cure, only management and that is only partially effective.
Believe me when I say that how I feel is symptomatic of my disease, and not dismiss it away as an excuse or minimize it because I look normal. Those with chronic health issues are doing their very best to just exist some days. Treat them kindly, with compassion. If you are a nurse or a doctor, believe me when I tell you that I am doing everything in my power to control my diet and exercising versus making excuses or lying. Have a willingness to try out of the box treatments if what we are following today is not working.
We don’t want a “new normal”, we want to be “normal”.
It was just a couple of years ago that a friend from high school and I reconnected. She had been diagnosed with Hashimotos too. She was in remission. No symptoms, off her meds. I was never even told this was possible from the doctor I was with at the time. So, understand that we are working with doctors who truly don’t understand our disease and how to treat it properly. For my diagnosis, sadly, not all treatments work the same for all patients. Lots of trial and error to find what works. Be patient with your loved ones as they try to understand their disease and find the right treatment plan. Take time to learn with them, go to a doctors appointment and hear it from the doctors mouth. Understand the struggles they will face, and the options set before them.
A couple of years ago, I knew something was off. I was swelling horribly. I would mention it at doctors appointments, but not taken very seriously. Someone else recommended that I start taking daily pictures of myself, so I could show the doctor what I meant. I still have those photos in my phone, a reminder to myself that this was not all in my head. I remember my doctor looking at the photos, confirming the dates they were taken, what seemed like millions of questions to try and determine what may have been causing the swelling. It was the first time I was taken seriously about the swelling I was dealing with on a near daily basis.
When even our doctors don’t fully understand our diseases, those with chronic illnesses… invisible illnesses are even more in need of the support and understanding of their loved ones. It is hard being sick in a way that only you can see and experience. Please don’t discount those in your life with chronic illness, don’t forget that they are working extraordinarily hard to appear normal… something you may take for granted.