Hashimoto's Disease: My Life as a Zombie
Perhaps the most difficult and challenging component to Hashimoto's thyroiditis is trying to convince the rest of the world it exists. Unless you are a fellow sufferer, the disease is impossible to understand and very difficult to clarify.
This article is a peek into my experience living with Hashimoto’s.
Life With Hashimoto's
Two attempted suicides. One arrest for uttering threats of suicide. A week-long sabbatical at the St. Michael's Hospital Psychiatric Ward. Eight years of crippling anxiety attacks. One clinical diagnosis of bipolar disorder.
4,380 hours of sleep per year. 8,760 hours of immobilizing exhaustion. Unknown hours of missed work. Unknown number of memories unremembered. Unknown number of social functions unattended. Several failed friendships and relationships.
Over 80 hours of emergency room wait time per year. Unknown number of UTIs, kidney infections, and anaphylactic episodes. Unknown number of hours spent on the toilet. $300 of antibiotics per year. Thousands of dollars of acupuncture, colonic treatments, vitamins, and acne skin treatments. An unexaggerated million needle pricks. 20 gallons of blood drawn. One ultrasound. Unknown number of hours of absolute misery.
Who I Am—And What I Am Not
This was my life. Most days this continues to be my life. However, now I can say with absolute confidence that:
- I am not crazy
- I am not lazy
- I do not have a mood disorder
- I am not bipolar
- I am not antisocial
- I am not clinically depressed
I am, however, one of the millions of people suffering from an autoimmune disease called Hashimoto's thyroiditis.
How can I make people understand my Hashimoto's?
Quite simply, my body is attacking itself. Specifically, my immune system is creating antibodies that are damaging my thyroid, preventing the gland from properly releasing the hormones my body needs for healthy functioning.
In Search of an Accurate Diagnosis
The disease has such an expansive range of consequences on the mind and body that it often gets camouflaged as many other physical and mental disorders. More than half of the people suffering from Hashimoto's are either undiagnosed or misdiagnosed.
My diagnosis took eight years. I saw countless psychiatrists and doctors. When hypothyroidism was suspected, I was refused a referral to an endocrinologist by two different doctors. I was prescribed countless medications and vitamins to treat constipation, depression, anxiety, memory loss, iron deficiencies, fatigue, and sleep deprivation.
I have developed alcoholic habits to subdue my symptoms. I have withdrawn from my friends, from my loves, and from my life. The disease has robbed me of time, memories, happiness, and simple pleasures. It has taken my spirit and left an empty shell.
How the Disease Affects My Body
For the most part, my physical symptoms are undetectable to the public. For whatever reason, I have been unaffected by one of the major physical symptoms of Hashimoto's: weight gain. This is because Hashimoto's affects each sufferer differently.
That does not mean, however, that I have not endured a long list of other debilitating symptoms:
Common Hashimoto’s Symptoms of the Body
lack of energy
frequent illness (including kidney and throat infections)
extreme sensitivity to cold (followed by hot flashes)
numbness and tingling in the fingers
low body temperature
I've experienced all of the above bodily symptoms, often several at the same time. They can be terribly draining.
I can often sleep 12 hours or more and wake up feeling completely ragged. Some days, I lack the energy to bathe myself, dress myself, or even feed myself.
Having said that, however, I'd much rather contend with the aforementioned than with the malady of my mind.
Memory Loss, Slowed-Down Cognitive Processing, and Depression
One of the effects of Hashimoto's is parallel to that of aging. The disease has made both my long- and short-term memory unreliable. It becomes difficult to remember, concentrate on, and process new information.
If I am asked to perform a task at work, 9 times out of 10, within seconds and steps en route to execute the task, I will forget what I was meant to be doing. I have forgotten the names of close friends and relatives. I have massive trenches of blankness when trying to recollect my past memories.
Due to these bouts of forgetfulness, I have disappointed and frustrated many friends, employers, co-workers, partners etc. I have been perceived as inconsiderate, uncaring, and irresponsible.
I have also shown symptoms of slowed-down cognitive processing. My mind frequently wanders without any clarity. I am unable to vocalize entire thoughts in an articulate and fluid fashion. I get stumped on words mid-sentence. I have forgotten meanings and spellings of words. It can be difficult for me to understand or retain new information. I frequently feel dense and unintelligent.
I also suffer from periods of extreme sadness and depression. I withdraw from social activities. I lack passion and enthusiasm. It is often impossible to get happy, regardless of the pleasures in my life. I avoid friendships and most conversations.
Unfortunately, I don't have a blinking light on my forehead indicating "Hashimoto's." Many of these symptoms can be easily judged as character inadequacies by someone ignorant of my condition. Some may believe and judge me to be haughty, snobbish, and/or peculiar. Some that have encountered me in certain moments may think I am slow or dimwitted. Others may find me moody and irritable.
The Inner Fight
As an artist and vocalist, I can't imagine a more terrible set of circumstances. Hashimoto's has stunted my creativity. It has made me indifferent as a performer. It has affected the quality and control of my voice. It has agitated my focus and moods in rehearsals and creative sessions. My once fiery passion for music, imagination, creativity, and originality has been smothered and snuffed out.
But there is a small piece of the old me left within, kicking and screaming, and she intends to fight hard to kick this thing in the ass. As part of that campaign, I felt it was very important for me to vent my feelings and thoughts regarding my condition to the public and to fans. This is partially an exercise to help me articulate and organize my own thoughts about Hashimoto's. I also want to reach out not only to fellow sufferers, but also to those who may be undiagnosed.
Understanding and Support
If you are a Hashimoto's sufferer or believe you might be, please reach out to me. Sometimes a little comfort from an understanding supporter can push our minds forward, even when our bodies would rather wilt into the dirt.
What Are the Treatments for Thyroid Disorders?
If any of the aforementioned symptoms sound familiar, I strongly encourage you to request that your doctor do a blood panel of your TSH levels, as well as your antithyroid antibodies. Please! Untreated Hashimoto's can cause heart attack, coma, dementia, Alzheimer's, clinical depression, and a number of associated autoimmune disorders.
Can medication restore proper thyroid function?
Unfortunately, restoring thyroid function by taking thyroid replacement does not necessarily make symptoms go away. In fact, more times than not, Hashimoto's sufferers continue to experience symptoms after medication is prescribed.
Is the disease curable?
Hashimoto's is incurable, and little is known about the rhymes and reasons of the disease. The disease can park you in a repetitive cycle of depression and fatigue, preventing you from taking the necessary steps to help yourself and relieve your symptoms.
Can diet and nutrition improve the condition?
Though at times it feels like a life sentence, I genuinely believe that with a little push from within, the cycle can be broken and sound body and mind can be revived. I believe that by experimenting with proper diet and nutrition, taking the right supplements, practicing relaxation techniques, and getting regular exercise—in collaboration with regular blood panels and dosage adjustments—my symptoms can be relieved. I am desperately hopeful.
Does alternative medicine work?
I am currently seeking many avenues of help from my doctor, my naturopath, my endocrinologist, and my acupuncturist, as well as educating myself by speaking to fellow sufferers and studying applicable literature. I intend to track my progress and keep you posted on my findings. Though I realize what works for me may not work for others, perhaps it might. Either way, it's worth sharing.
I hope that by imparting my experiences, trials, failures, and successes in achieving physical and mental restoration from Hashimoto's, I will help not only myself but also many others who suffer needlessly, particularly for those who suffer in the worst way: silently and without compassion from others or from themselves.