Living with an invisible disease often implies feeling judged and misunderstood by others. Indeed. Besides managing debilitating symptoms, there is also an additional obstacle: people. And trust me, sometimes this part can be even harder than living with a disease. That is why communication is important. If you live with Hashimoto's disease (or an invisible disease), this article will help you to have the best communication with your loved ones, colleagues and medical professionals.
On my side (and as far as I know), I have been living with Hashimoto's autoimmune disease since 2019 and I have stopped my hormone replacement therapy since July 2020. During my recovery process, I felt very lonely. First of all, I had issues explaining my symptoms. Because it was the first time in my life that I was experiencing this type of sensations in my body. At the same time, I was afraid of expressing myself because of constant judgmental remarks from others.
Some of judgmental comments I have heard:
"Your results show that you are in perfect health. It's in your head." – The first doctor I visited in February 2019.
My answer today: "No, I was not healthy at all as my level of anti-TPO antibodies was elevated at +1000 (normal range below 30). You should have done further researches."
"If you feel that tired, then go for a run. You will have a good reason to be tired." – A friend.
My answer today: "I wish I could have run a marathon at that time, but I could not even walk from my bed to the kitchen!"
"Are you sure you're not depressed?" – Someone close to me.
My answer today: "No, I wanted to do 36,000 things, but my body was simply not following."
"You are emotionally unstable." – The person I thought was the love of my life.
My answer today: "No, I was emotionally and physically drained from not knowing what was going on with my body. I didn't know if I was going to stay like this my whole life."
"Are you going to rest again when you get home? That's weird at your age!" – Someone close to me.
My answer today: "Is it that wrong to rest when your body needs it?"
"If doctors tell you that everything is fine, it means that everything is fine, right?" – A former manager.
My answer today: “Doctors were wrong. I knew there was something going on and I was right to listen to myself."
I heard so many things before the diagnosis. And I felt misunderstood at that time. It was difficult to describe my symptoms because I couldn't understand all the changes that were happening in my body.
I remember feeling so tired that I didn't even have enough strength to explain or argue. So, I let people think they knew better about my internal body sensations than me.
With the benefits of hindsight, I can now say that we should not blame others for being ignorant when we are not able to describe the situation better ourselves. To be honest, people around us can be a real support from the moment we manage to communicate.
Tip 1: Communicate with medical professionals
Understand your disease is the the first step to have the best communication with medical professionals.
I realized that some doctors did not know how to explain my diagnosis to me. When I asked to describe the mechanisms of Hashimoto's disease, no one was able to answer. They would simply reply: "That's how it is. It happens. And sometimes it can go away." It was not a satisfying answer for a sick person.
Since no one was able to give me a clear answer, I had to find it myself. So I made my own researches and I started to read a lot of books, stories, scientific studies, etc.
And I finally understood how my Hashimoto's developed!
It helped me so much to understand the disease, identify the triggers of my Hashimoto's and investigate about possible treatments.
Doctors are here to guide and support you. But as a patient, it is important to have a good understanding of the condition you live with. After all, you are the one experiencing symptoms, right?
My recommendations as a Hashimoto's patient:
Make your own researches about the root causes of the disease and possible treatments (with your doctor/endocrinologist/naturopath, thyroid associations)
Identify your Hashimoto's triggers
Keep in mind that Hashimoto's disease is detected by the presence of thyroid antibodies that attack the thyroid gland. Your goal is to limit the attack and balance your hormones!
Always ask for a copy of your blood results including anti-TPO, anti-Tg, TSH, T3, T4, FT3, FT4, RT3 for the best follow-up. In the end, it is your body, your health and you are the one who will follow the progress with Hashimoto's throughout your life!
Tip 2: Share with your loved ones
Your family and your friends are here to help and support you mentally. They are the one with whom you should not be ashamed to communicate. The only thing they wish for you is your happiness. Note that it can also be painful for them to watch you suffer. So the most important thing : explain your symptoms with simple words.
My recommendations for a better communication:
List and describe all the symptoms you might experience
For example:
- in case of fatigue: "I feel so exhausted that I can't even write a text message"
- in case of depression: "my body and my mind are filled with constant negative emotions that I cannot control"
You see ? This open communication will help people around you to have a better understanding of what you are going through (and for you, as well).
Share stories from Hashimoto's patients with your personal circle. You will find some stories in Facebook groups. You can also share my YouTube videos and Instagram posts. And if you are not a Hashimoto's but you do know someone living with this condition and have any questions, feel free to comment this article, I will be happy to answer!
Tip 3: Share with your colleagues
We spend most of our time at work. If you are dealing with painful symptoms, it is preferable to talk about it with your manager and/or trusted colleagues to avoid loneliness. Of course, you don't have to if you don't feel comfortable with it. The purpose is to explain that you suffer from an illness and you do your best every day to live with it.
In my opinion, it is important to lift taboo about invisible diseases. Especially, because sometimes you can potentially do strange things for someone even though you don't intend to. For example: a former colleague once asked me if I had any particular dietary restrictions for the canteen. So I said that I don't eat gluten, dairy food and that I limit soy consumption to no more than twice a week. I could sense a weird reaction, so I kindly explained to her that I would not end up in the hospital if I accidentally ingest any. But in the long term, it could increase the inflammation in my thyroid. And she immediately understood my situation!
My recommendations:
Talk with your manager and trusted colleagues
Share articles or Hashimoto's stories to show that you are not the only alone living with it
If you communicate more about Hashimoto's disease, it will increase visibility for people living with this condition. The more the world is informed, the more it will facilitate diagnosis and give access to faster solutions for patients.
Communication is one of the main keys to build human relationships. If you can't express yourself, people around you won't put themselves in your shoes. Sharing about your illness doesn't mean you display your weakness. It only shows that you empower others to understand you better. And in the end, it can only be beneficial during your remission process!
Anaïs Damour
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