Your friend or loved one has Hashimoto’s Thyroiditis, one of the most common autoimmune diseases diagnosed today and you have no idea what they are going through.
Hopefully, I can give you a peek into one part of their lives. Before I was chronically ill, I had no compassion for those who struggled. I didn't understand anything other than, meeting deadlines, getting the job done well and pulling yourself up by your bootstraps. Then I became sick and it took me years to show myself compassion and understand that I just move at a different pace these days. It's almost like having an accident that causes you to lose a limb. You aren't the person you were before. You have changed and now you have to learn how to live your life differently. Only nobody can see that you are different now because it is an invisible disease. So kudos to you for taking the time to learn and better understand your loved one or friend with a chronic illness. You are the best and we totally appreciate you.
Asking someone that has a chronic illness what it is like to have an autoimmune disease like Hashimoto’s is like having someone come up to you and asking you to tell them everything you learned in elementary school.
What do you mention first?
Should you go in chronological order?
Order of importance?
What information do you include?
What do you leave out?
So instead of coming up with an eloquent answer, you just kind of stumble your way through trying to explain it. When you mention a symptom, that triggers you to remember that you have another symptom. Don’t forget seasonal symptoms and weird things that happen to you whenever you eat trigger foods as well. Yes, you rabbit trail it.
This is the way I have felt for weeks trying to come up with the words to explain what it is like to have Hashimoto’s Thyroiditis to a friend that is not sick.
What it is like to have Hashimoto's Thyroiditis?
It seems like such a simple question, but as I mentioned above, it can quickly become complicated. I sat at the computer and thought...
What do I talk about first?
What is most important?
What words can I use to allow you to truly understand and feel what it is like?
Argh! If only you could understand for just a minute what it is like!
Then I remembered how terrible this flu season has been and it gave me an idea!
This flu season people have been getting a variety of illnesses. They have lasted weeks, gone away for a few days and come right back. Disrupting lives over and over just when people thought that they were finally getting back to their old self. That. That is what having Hashimoto’s is like! Now instead of a month or so, make it years. Take all the stages of being sick, mix them up in a shaker cup, close your eyes and pick one. That is what it is like waking up every day to see how you feel.
Will you get the day where you can function, but you have the nagging first signs of a cold warning you that you better look at the next few days and have a “plan b” for everything?
Will you get the day smack in the middle of your cold where you are stuck in bed unable to even list your head?
Will you get that exciting day towards the end of your cold where you feel “So. Much. Better” so you try to get back to normal only to end back in bed because it was too much too soon?
The best way I can describe the physical symptoms of having Hashimoto’s or a chronic illness like having a cold every day of your life..
Let’s talk about the mental and emotional side of having an autoimmune disease.
Everyone has a normal functioning range. It may not mean that you are feeling 100%, it just means that most days you feel “this good” and you have learned for the most part how to adapt to living your life at that functioning level.
Imagine you are humming along at your normal functioning level and then BAM!
The first symptom of having a cold comes out of nowhere. That first sneeze or first twinge of a sore throat.
If you don’t have an autoimmune disease, you think, “crap was that a sign that I am getting sick?! I hate getting sick. Ugh! I have so much to do this week! Okay, let me think about what I have going on. What can I cancel? Do I need someone to drive the kids to something they can not miss? What is the hubby have going on? Can he help out?”
Life with autoimmune disease: Same scenario
"Crap, here we go again. Did I overdo it this week? Did I eat something with a trigger ingredient in it? Was there a trigger ingredient somewhere I went today? What did I touch? Are my autoimmune levels off? Do I need to check my vitamin D? Are my stress levels too high and that is what is causing this? Crap! Am I getting a cold?! Ugh! I have so much to do this week! Okay, let me think about what I have going on. What can I cancel? Do I need someone to drive the kids to something they can not miss? What is the hubby have going on? Can he help out?”
What is different about having a cold and an autoimmune disease?
When you have a cold, you sneeze, cough, may have a runny nose, sound stuffed up when you talk or get that deep raspy voice. These are all outward signs that you have something wrong with you.
People in your life, notice these signs and offer empathy, they ask how you are feeling. They ask the details of when you started to feel sick and how it all came about. They ask you how long you have been feeling sick and they may even offer to help you out in some way. Maybe they deliver dinner, offer to drive the kids somewhere or have them over. Your boss may even encourage you to work from home.
Now imagine feeling the same way with no outward symptoms.
There is no way for anyone to tell that you are not feeling great unless you tell them.
That may work and be socially acceptable for the first few times, but let's be real. That gets tiring for all involved.
So just know that we can have the same smile we always have and we could be fine, we could be feeling a little off or we could be barely standing just waiting until we can get home and plop into bed.
Confusing isn’t it? Knowing that you care, and want to understand our illness on a deeper level means the world to us. Thank you.
Are you overwhelmed with managing your day and your disease? I was too! It took me years to figure out how to manage my life with an autoimmune disease. Schedules, habits, systems, symptoms, doctor appointments, even my closet! I took all of that information and put it into an easy to follow self- paced program just for you! Join below to get years of trail and error that led to success laid out for you with copy and paste templates!
We have created a space for you to hangout with other people supporting loved ones with autoimmune disease and looking to lead a healthier life.