I asked my Facebook community of Root Cause Rebels the question you see above. Here are some of the responses…
“Confusing, exasperating, numbing, exhausting. It’s so incredibly hard on those that have it, as it is hard on those that love us. It’s hard to explain the feelings, the desperation, the weight gain, and the lack of intimacy, to those that have not experienced it first hand, it’s just hard.”
“Sleeping in thick socks and a sweater because even if I have the AC set to 70 degrees in my house at night, I feel it’s 40 degrees.”
“Like you don’t recognize yourself anymore in many ways, and you keep trying to find the old “me,” but she’s long gone. I miss the girl I was before Hashimoto’s.”
“I feel like a completely different person, and I can’t seem to get that person back. I hate that. What is worse is no one gets it, your friends, family, doctors. Kind of breaks the spirit.”
“I’ve spent 8 years being treated for debilitating headaches and fatigue, and all throughout those years, I missed out on life. I missed seeing my oldest play in her last state basketball game. I missed the last 6 years of driving my kids to school. I missed out on going to lunch with friends and ate at my desk because I had no energy to work any later than I had to. In summary, I missed out on life. I ended up burning out and quit the job I loved because I just couldn’t get up anymore/work at day/headache at night. Took all kinds of preventative meds, which took care of the pain but not the other symptoms, all to find out that I had Hashimoto’s and by treating that and adrenal fatigue, I didn’t need to take the anti-seizure/antidepressant meds (the preventatives). I had memory problems when I used to have a slightly photographic memory. All because my general physician based his diagnosis on TSH, which is still low but normal, even though I don’t spit out any T4/T3 and my antibodies are off the chart.”
“Husband: ‘I figured out why the tub is backed up!’ as he holds up a huge wad of my hair. Again.”
“Walking against the current of a raging river, on a good day.” (Fatigue)
“Like piranhas are gnawing on every joint of your body.” (Joint pain)
“Like you are standing in a dense fog, not knowing where to go.” (Brain fog/short term memory loss).
“An out of body experience, where I don’t know who I am anymore, nor how I got this way. When I’m tired, I feel like there’s a weight on my body preventing me from moving.”
“Like wading through chin-deep mud or quicksand with a load of bricks on your back, the day after the most grueling workout imaginable, after pulling several all-nighters in a row. Sometimes hung-over on top of that, except without the fun part. You think ‘if I could only rest for 5 minutes’ and wake up 13 hours later.”
I wish I could tell you that most people with thyroid disease see a disappearance of their symptoms as soon as their thyroid hormones are addressed with medications.
Unfortunately, this is not always the case. Some people may continue to have a persistent reduction in their health-related quality of life, even when their hormone levels fall within the “normal” laboratory reference range.
Exploring the Experiences of People with Thyroid Disease…
A 2014 study by a group of Danish psychologists studied the effects of hypothyroidism and hyperthyroidism on health-related quality of life, by doing a series of one-on-one qualitative interviews with people who had thyroid disease.
They wanted to explore the reasons, from a patient perspective, as to the struggles that people who were on thyroid medications continued to experience.
They reported that the severity of the participants’ symptoms varied considerably, where some didn’t have any symptoms, while others had symptoms that affected almost every area of functioning.
One person’s Hashimoto’s is not the same as another person’s Hashimoto’s.
Researchers reported that people with thyroid disorders often felt like they had lost control over their own physical and mental states:
- Most people with Hashimoto’s reported feeling drained, despite their thyroid hormones being within the normal reference range.
- Some had an altered sense of time; others felt like “observers watching the world pass.”
- Often, they would blame themselves for their lack of energy, feeling guilty and telling themselves to “pull it together.”
- People with Hashimoto’s may feel a lack of control over their bodies. “We used to be able to control our bodies, but now, our bodies have begun controlling us. Mind over matter seems much more difficult.”
- On the other hand, people with hyperthyroidism felt like they had a restless mind and a loss of emotional control. They felt like their intention was separated from their mind, and that they could not control their feelings of impatience, anger, and irritability, which then led to involuntary and out of proportion emotional outbursts!
To me, the scariest experience after my thyroid diagnosis was the dissociation from myself. I became numb and apathetic to life, unable to feel any emotion, good or bad. I no longer had a desire for the things that made me human, such as being close to others, making friendships, following my passions and loving the people in my life. It was as though my inner “love” switch was turned off or dimmed and I was living in a cold, dark world and all but a very small part of me didn’t care. Like the Pink Floyd Song, I had become comfortably numb.
Often in the early stages of Hashimoto’s, a person may swing into hyperthyroidism. Looking back at my thyroid journey, I can see times when I was clearly on a hyperthyroid-induced emotional roller coaster.
Before I was diagnosed with Hashimoto’s, I had always been very polite, and described as a “diplomat,” because I was able to maintain patience and composure in almost any situation. But suddenly, I found myself “wearing my heart on my sleeve.” My husband and I got into an argument before meeting friends for dinner, and I spent the entire evening sulking and sobbing, making our friends super uncomfortable. Right or wrong, normally, I would have put on a big smile and pretended like everything was fine.
Another time, when I started taking thyroid medications but was overdosed, I was driving with my mom in the car and following her directions. She wasn’t paying attention and forgot to have me turn somewhere, then tried to tell me to turn suddenly.
I got so mad that I started yelling at her and speeding!! This was completely out of character for me! My poor mom was shocked and holding onto her seatbelt for dear life! I completely blew the situation out of proportion. It was like I had no fuse! So what if we missed a turn? We were going on a leisurely shopping trip and had the whole day ahead of us! Of course, I felt horrible and embarrassed for treating my mom this way. Sorry, Mom!
Can you think of a time when you lost your cool with a loved one?
The lack of obvious “physical” features of Hashimoto’s, (well, you don’t “look” sick), often makes it difficult for loved ones, as well as patients themselves, to understand the impact of the condition.
A person who is sniffling, coughing and has a fever is expected to sleep all day, but a person who has hypothyroidism, “an invisible disease,” often feels unjustified for wanting to sleep all day, and others may not understand.
When we have an invisible illness, some of us have also found it difficult to validate the effects of our illness, because our symptoms are virtually invisible to others. Sometimes we need to see our lab tests to understand how “sick” we are. I remember one client telling me it took a TSH of 100 and a doctor to admit that she was exhausted. But, of course, for many of us, even the lab tests don’t tell the whole story.
Thyroid antibodies, even when TSH is completely normal, can produce symptoms such as; pain, anxiety, distress, fatigue, weight gain, and depression. Furthermore, many of us don’t fully understand the impact of our condition, because the non-specific symptoms of autoimmune thyroid disease are often brushed off as being part of everyday life…
It doesn’t help the situation that most of us are brushed off by doctors and loved ones.
How many of us have heard one or more of the following?
- “It’s all in your head.”
- “You’re just stressed.”
- “You’re just getting older.”
- “Everyone’s tired.”
- “You must be depressed.”
- “You’re eating too much.”
- “You’re not trying hard enough.”
Significant others often do not acknowledge or understand the effect the condition has on their loved one’s daily functioning.
“If I had a dollar for every time my mom told me to get out of bed when I was growing up, likely with the beginning stages of Hashimoto’s!” one of my readers commented.
I remember trying to tell my husband how awful and tired I felt when I was first diagnosed, and all he could say was, “I think it’s in your head. You look just fine to me.” Family members told me that if I just tried a little harder, woke up earlier and stopped feeling sorry for myself, all would be well.
In contrast, whenever I’ve had minor surgeries, like a wisdom tooth extraction that left me with chipmunk cheeks, or a deviated septum surgery that left me with a bandage on my nose, everyone felt bad for me! My family and friends went out of their way to take care of me, encouraged me to rest, and made special food for me. Of course, the irony was that the pain from the surgeries was negligible compared to the pain I felt from Hashimoto’s. Those around me saw the proof of my pain after the surgeries.
Some people with Hashimoto’s will try to act like superheroes and minimize their symptoms while hurting inside, while others may exaggerate symptoms to gain some sympathy from their loved ones. Either way, researchers found that most people long for an acknowledgment from their significant others.
For me, when I was deep in it, admitting my symptoms felt like a defeat and like self-pity and a part of me was ashamed of the feelings I had. But I can tell you that self-care and self-compassion is a big part of healing, and that is what ultimately brought me out of the dark, cold place I used to live in secret.
It’s OK to admit that you don’t have everything figured out and that you’re not the superman or superwoman you are pretending to be. It’s OK to let loved ones know that you are going to need their support and understanding during this time. And it’s understandable that you are afraid that you will feel like this forever.
Today, I encourage you to connect with what you’re going through and to show yourself the same compassion you would show to a child or pet that was going through a difficult time.
The first step in overcoming any problem is to admit to the problem, and I recommend that you do an honest inventory of what you’re going through and give yourself permission to show yourself some serious love and compassion.
This is a crucial step to awakening to the clarity of where you are in your journey and where to go next.
- Be honest, how does thyroid disease make you feel?
- What are the things you will do to show yourself compassion and serious self-love?
- If you truly loved yourself, what would you do for yourself?
I hope that you show this article and your reflections to your loved ones, so that they too can get a glimpse of what you’re going through and that they can see past the invisible illness, the superhero mask you’re wearing and your struggles to be heard, and give you the support, acknowledgment and validation that you are hoping to get from them.
If you’re like me, you probably had placed high hopes on thyroid medications after your diagnosis, only to be disappointed that they only helped a few things, while you were left with dozens of residual symptoms. This is because there’s much more to autoimmune thyroid disease than just thyroid hormone levels. We need a whole person approach to become our best selves again.
And right now, even if you feel like you will never get better, I want to let you know that you can get your life back. I’ve done it, thousands of my clients and readers have too. My life’s work is dedicated to sharing success stories and strategies for health recovery so that more success stories and strategies can be created and uncovered.
If you’re new to this diagnosis, you can read through some of my most helpful articles Where do I Start with Hashimoto’s, What’s Going on with Hashimoto’s, Which Type of Diet is Best, and I also have a book on recovering from Hashimoto’s. If you’ve been challenged for a while, I also have some advanced posts: Are you Doing Everything for your Thyroid but not yet Well?, 6 Different Root Causes and a self-management course that can walk you through the steps to healing.
- Nexø MA, Watt T, Cleal B, et al. Exploring the experiences of people with hypo- and hyperthyroidism. Qual Health Res. 2015;25(7):945-953. doi:10.1177/1049732314554093