Minding Invisible Illness

By Erin Kaled, Editor

Over 50 million Americans—20 percent of the population. One in five people suffer from an autoimmune disease. Unfortunately, I am one of those people. I’m not looking for a pity party. I’m not looking for sympathy. I’m just a person asking for others to understand more about this “invisible illness.”

Three million people are diagnosed with arthritis every year. Type one diabetes is prevalent in children. In autoimmune diseases like these, the immune system attacks healthy cells because it recognizes them as a threat. In easier terms, the body is having its own civil war.  

I have Hashimoto’s thyroiditis. Although less common than other autoimmune diseases, it still affects 200,000 people every year. So the war in my body is in my thyroid, which produces hormones for every organ. The little gland in the front of the neck regulates metabolic rate, energy level and weight.

Although Hashimoto’s is more prevalent in middle-aged women than kids and teens, it can happen to anyone at any stage of life. I first developed symptoms about two years ago. In the beginning, they were invisible. Nobody assumes anything is wrong. It is often misdiagnosed as anxiety or depression. You’ll look fine on the outside, healthy even.

Until you don’t.

Pale skin, thinning and loss of hair, enlarged thyroid gland and blisters covering your hands and feet: just some of the giveaways that something else is wreaking havoc on your body other than mental illness.

That’s just the outside, however. Inside, your joints and muscles ache all the time. Constant fatigue, fluctuating weight, slow heart rate, sensitivity to cold, pins and needles, heavy periods and infertility. If left untreated, it can eventually cause untreatable depression, heart disease and myxedema coma. Even patients who choose to undergo thyroidectomy face treatment the rest of their lives. Pregnancies are most likely to end in miscarriages if the mother isn’t taking enough medicine.

A patient can only be tested for Hashimoto’s through blood tests. If the results come back with abnormal TPO antibodies, something is unsound within the body.

Hashimoto’s is one of over 100 autoimmune diseases including lupus, Multiple sclerosis, Celiac disease, and more. Many are triggered by environmental factors and genetics. One’s quality of life is worse than others, and every day is a long and lonely struggle.

Shame and guilt are prevalent within the autoimmune disease community, and more people struggle than others realize. The stigma of being chronically ill is overwhelming at times and embarrassing. The truth is, patients with autoimmune diseases can do just as much as healthy people. It might take us longer or drain us of more energy than others, but nobody likes to be looked down on. Privacy is also appreciated. Nobody wants to go to a family party and hear Mom blathering on about something personal to Aunt Betty.

Autoimmune diagnoses are a long and lonely road, and every struggle is different. It’s no fun going to the hospital every six months for blood testing for Hashimoto’s, or avoid gluten with celiac disease or have rashes that flare up caused by lupus throughout life.

Even though it’s frustrating and unavoidable, it’s not unbearable. From the support of family and friends to the helpful doctors that a patient encounters throughout treatment, you manage to feel a little less alone, scared and uncertain.

Personally, knowing that loving friends and family members are behind you means the world. The love and support from others is just enough to keep going and fight another day.       

Research different illnesses, watch documentaries and read about autoimmune diseases. Even get tested yourself. Autoimmune diseases are more common than you think, so taking the precautionary measures is never a bad idea. A person with an autoimmune disease is not defined by a statistic or a diagnosis, but by the way they live their life despite the difficulties.