I have Hashimoto’s thyroiditis, the first autoimmune disease ever discovered — more than 100 years ago now. This condition means that my immune system attacks my thyroid, causing my thyroid to work too slowly. The thyroid gland produces hormones that help regulate breathing, heart rate, body weight, and much more.
Following my first article in this series, I was overwhelmed by friends and strangers who reached out to me about their Hashimoto’s and other autoimmune diseases. Many commented that no one understands what they are going through, so I wanted to expand on what it means to have a sometimes “invisible” disease.
When I was first diagnosed, I told everyone. I was so excited to have an answer to the unusual changes I’d been experiencing. Once I was getting properly treated, the previously unexplained weight started falling off. I had my energy back. And everyone was noticing. Life was great.
But, with many autoimmune diseases — and chronic illnesses in general — you tend to have ups and downs. Symptoms return, get worse, or … wait for it … you get brand new ones! Yay!
That unpredictability is incredibly frustrating for someone coping with a disease. It also makes it hard for family, friends and co-workers to keep up with or to understand what it all means. Sometimes there is a tendency to oversimplify or try to “normalize” what the person with the disease is experiencing, which leads to comments that are — not helpful.
The most frequent comments I hear are:
Let’s break down why these aren’t the best comments — not to make anyone feel bad, but to explain more about what’s going on when you have an autoimmune disease. Almost always when someone is being insensitive or unsupportive, it comes from a lack of understanding. Even my own parents didn’t fully “get” what I was going through until they read my first article in this series — and I was diagnosed over a decade ago.
It’s true. No stuffy nose or hacking cough, not wearing a neck brace or a cast — in that sense, I look perfectly healthy. But regardless of outside appearance, I live with an incurable, chronic, autoimmune disease. That’s every day.
Now, the good news is that advances in medicine have made it possible for people with Hashimoto’s, multiple sclerosis, lupus, fibromyalgia, and other chronic diseases to live relatively normal, full lives. But that doesn’t mean that every day is a great day or that symptoms like fatigue aren’t “real” just because nothing else is visibly wrong.
What you can’t see does, in fact, exist as part of a disease someone is coping with daily. So, if they say they’re not feeling too well, “I’m sorry to hear that” or “Is there anything I can help with?” are better responses than “you don’t look sick.”
And, speaking of fatigue …
There is the “tired” that everyone gets, yes. And then there is “thyroid tired”, which, trust me, is a totally different kind of tired. Can I get an “amen” from the thyroid hormone-deficient folks?
Fatigue is also a common problem for others with autoimmune and chronic diseases. It’s probably the most difficult symptom that people like me have to explain. Unfortunately, it’s also one of the hardest symptoms for doctors to address. Catching naps, drinking lots of water, eating right, exercising — yes, it all helps, but nothing has taken my fatigue away completely.
There are days I probably say “I’m tired” a hundred times. If someone like me is saying that, there’s a good chance we are talking about a deeper sense of fatigue than what a healthy person might feel due to a couple nights of shortchanged sleep. It means a lot when people recognize and empathize with my “I’m tired” instead of dismissing it with “everyone gets tired.”
It’s helpful to remember that someone with an autoimmune disease has a body that is constantly fighting against itself. Just the thought of that is exhausting, don’t you think?
First — there is no cure for Hashimoto’s and many other autoimmune diseases. The medications and treatments that exist can be very helpful, but they address symptoms and not the cause.
So yes, we can take medication. Many of us do. Some of us take lots of medication. But there is no medicine that makes the disease go away. There are only levels of control — which can fluctuate just as the disease itself does.
For example, Hashimoto’s does not simply mean that I have an underactive thyroid — the root problem is that I have an autoimmune disease in which my antibodies are constantly attacking my thyroid. I can and do take medication that improves thyroid stimulating hormone levels, but they do not reduce or control those antibodies attacking my thyroid. As a result, there are constant fluctuations in hormone levels. The right medication for one period may not be enough if those antibodies ramp up for another period, and it may be too much if the antibodies aren’t responding as aggressively.
The key point is that “taking medicine” is not a neat and final solution. I’m taking medicine — but some days that doesn’t prevent me from feeling pretty lousy. On a related note, the fluctuations I mentioned mean that people like me get to experience the added frustration of having lab numbers come back in the normal range … because in that tiny moment of time where the blood was drawn they were in the normal range … even though day-to-day symptoms may be all over the place.
If you know someone with an automimmune disease, your eyes are almost never going to be the best judge of how they’re feeling. Instead, listen — and trust what the person tells you.
When someone with multiple sclerosis tells you they literally can’t take another step — believe them. They are not being lazy. Their multiple sclerosis might be causing severe pain in their legs.
When someone with fibromyalgia says they hurt so bad they can’t get out of bed — believe them. They are not exaggerating to get attention — the pain from a fibromyalgia flare-up can be excruciating and last for days.
When someone with Hashimoto’s tells you they have to cancel plans because they are too tired to go out — believe them. They are not trying to avoid you. Hashimoto’s can cause fatigue so severe that it just isn’t desirable — or even possible — to do everything as planned.
As someone living with an autoimmune disease, I know that sometimes getting the conversation started with those around us can be difficult. Not everyone feels comfortable talking about health issues. But talking about your condition, and helping other people understand it, can really make a difference.
With that in mind, this article from Every Day Health has great tips for talking to others about your disease. I also love Christine Miserandino’s “Spoon Theory” — a great activity she developed to demonstrate to others what it’s like to have a chronic disease. You can read about it on her website, http://www.butyoudontlooksick.com, which also has other good resources.
People ask questions or make comments because they don’t understand. Try not to take it personally and don’t be defensive. They simply don’t know. It’s your responsibility to make them aware of your unique condition. Awareness leads to understanding.
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