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Autoimmune diseases affect more than 23.5 million Americans (“Autoimmune Diseases”). While this is a large portion of the population, many people are unaware of what causes these diseases. Autoimmune diseases occur when the immune system cannot differentiate between foreign cells and the body’s cells, which leads to the body making autoantibodies that attack the body’s cells. This attack on the body causes fatigue and dizziness, along with other symptoms depending on the autoimmune disease. While there are medications to treat autoimmune diseases, the path to being diagnosed and treated can be long and frustrating and, ultimately, affects that person’s entire life. Therefore, when doctors and society attempt to sum up autoimmune diseases by only listing symptoms and prescribed medication, the summation falls short because it fails to include the person’s physical, mental, and emotional state before, during, and after being diagnosed. To capture what living with an autoimmune disease is like for someone, I interviewed my mother, Krissy King, who was diagnosed with Hashimoto’s disease in 2011. I aimed to uncover how Hashimoto’s disease affects people’s lives holistically and what this disease indicates for these people’s futures. While I understand that no one can completely understand what living with this autoimmune disease is like other than Krissy herself and others with this disease, this illness narrative can hopefully create a more holistic picture of Hashimoto’s disease.
Before understanding the complications of this disease, it is pertinent to understand what is happening in the body that causes it. Hashimoto’s disease is a condition where “the immune system attacks [the] thyroid, a small gland at the base of [the] neck below [the] Adam’s apple” (“Hashimoto’s Disease”). This causes the thyroid, which is a part of the endocrine system that secretes hormones to coordinate bodily functions, to become inflamed and underactive. Having an underactive thyroid can also be called hypothyroidism, which causes fatigue, joint pain, muscle aches, hair loss, depression, and many other symptoms (“Hashimoto’s Disease”).
Krissy experienced symptoms of fatigue, dizziness, sore throat, depression, and a rash on her stomach and back every night, as well as sometimes on her joints. She described the rash as being itchy and sometimes burning. When she began to experience these symptoms for the first time in the summer of 2010, she began going to the doctor. She visited a primary care physician, an endocrinologist, and a rheumatologist before she was diagnosed with Hashimoto’s disease in the winter of 2011. After diagnosis, the doctors prescribed her Synthroid. This is a medication that replaces thyroxine, a hormone that the thyroid is underproducing, which helps to regulate the body’s energy (“What is Synthroid and What is it Used For?”). This medication controls Krissy’s symptoms so well that the disease does not affect her day-to-day life, and now, the only symptom she experiences is the rash about once a month.
However, while Hashimoto’s disease does not affect her life now, the year and a half spent trying to identify the cause of her symptoms affected her mentally, physically, and emotionally every day. At the time, Krissy was teaching young children. During her nineteen years in the classroom, she was the teacher every parent wanted their children to have. She was fun, upbeat, and always had a smile on her face. And after a long day of catering to other children’s needs, she came home to me, her seven-year-old daughter. She always made sure we did something fun after school, whether it was going to the park or watching Monsters Inc., and she let me have lots of playdates. She would do anything for me. She has always been and still is an incredible mother, all the while, making sure to teach me important life lessons. Krissy always treated everyone with kindness and had that southern charm that makes anyone feel comfortable around her.
However, Krissy struggled to find the energy to live her life during the year and a half it took for doctors to identify the disease. She told me that the fatigue was so bad that she “couldn’t get up [or] get out of the bed sometimes,” which was very unlike her. The fatigue did not just affect her ability to wake up in the morning. It also affected her ability to play with me after working all day, even though she wanted to. Being a mother was her biggest joy in life, and her untreated Hashimoto’s made it so that she could not physically obtain the energy to do the things she wanted to do as a mother. She told me that she could “remember us going to the pool that summer and not being able to get out in the sun, having to sit in the shade, and not getting to play with [me] as much as [she] wanted to.” During this portion of the interview, I could tell she was beginning to choke up because she understands how limited our time is, especially now that I am more grown-up and in college, and it was hard to have to miss out on so much of that time because of the fatigue.
Along with the fatigue, Krissy battled with depression and sadness due to Hashimoto’s going untreated. She went from her typical happy and outgoing self to struggling to make it through, much less enjoy, her daily interactions and tasks. This depression was made worse by the fact that the diagnosis process was so long because there is not a specific test specifically used to identify Hashimoto’s. The way to diagnose someone is through tediously eliminating many other diseases. The doctors were trying to eliminate lupus and rheumatoid arthritis from potential diseases that could be causing the symptoms. While she did not have either of these diseases and, instead, was diagnosed with Hashimoto’s disease, when she thought she could have one of these two other diseases, she was very fearful. This is because lupus and rheumatoid arthritis are worse conditions to have. So, for a year and a half, fear of the unknown made her depression worse. Needless to say, the diagnosis process took the biggest toll on her because it took so long due to having to conduct a process of elimination, and she just wanted to have the energy to play with her child again, as well as enjoy her life like normal while not living in fear.
When she started the Synthroid medication in the winter of 2011, “[she] felt like [she] could start living a normal life again and not be so tired all the time.” She no longer experiences the same symptoms as she did before, and in general, it does not affect her day-to-day life, except around once a month, she will still get the rash. Now, she only has to visit the doctor once a year to check that the level of Synthroid she is taking is right. A few times, she developed symptoms again, like feeling extra tired, so she went more often than once a year. But the most frequently that she ever went was once every six months. This happened mostly towards the beginning of her diagnosis. And in the first couple of years, the doctors had to change her Synthroid levels twice. But, in the past five years, her medication dosage has not changed.
After enduring a long diagnosis process and finally finding the correct medication to combat Hashimoto’s, she told me she learned a lot throughout this experience. She talked about having patience with yourself “because there are so many times where [she was like] ‘What’s wrong with me?’ but [the doctors didn’t] have an answer.” She explained that it made her feel like she was going crazy and like maybe everything she was feeling was in her head. So, for people going through the diagnosis process of Hashimoto’s or many other autoimmune diseases, I gathered that it is important to trust your instincts and to trust that you know your body. No one can completely understand what your body feels like, so do not doubt yourself and fight through the frustration. Because with many autoimmune diseases once the doctors diagnose you, there is a treatment that can control your symptoms and help you get back to your normal life as Krissy has.
“Autoimmune Diseases.” Office on Women’s Health, 1 April 2019, https://www.womenshealth.gov/a-z-topics/autoimmune-diseases#:~:text=How%20common%20are%20autoimmune%20diseases,Hashimoto’s%20disease%2C%20affect%20many%20people.
“Hashimoto’s Disease.” Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855.
King, Krissy. Telephone interview with the author, 12 Nov. 2021.
“What is Synthroid and What is it Used For?” SingleCare, 4 May 2020, https://www.singlecare.com/blog/what-is-synthroid/.
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