What’s an autoimmune disease? If you aren’t sure, then you aren’t alone. In fact, fewer than 13% of Americans can name an autoimmune disease according to the American Autoimmune Related Diseases Association (AARDA). And that’s a problem when these diseases are one of the top ten killers of women under the age of 65.
According to Web MD, an autoimmune disease occurs when the body attacks and damages its own tissues due to over-activity of the immune system. Today about 50 million Americans have one of the more than 100 autoimmune diseases that includes Crohn’s, celiac, rheumatoid arthritis, vasculitis, and recently, vitiligo, a condition that causes the loss of pigment in the skin.
What is it like to live with an autoimmune disease? Or perhaps, eight? One San Diego woman knows all too well, and is telling her story just in time for National Autoimmune Diseases Awareness Month this March.
At twenty-nine years old, Erica James is a fitness hobbyist and former bikini model with a thriving Instagram following and recently-launched marketing business. From the outside looking in, it’s easy to think she has it all. Yet behind the scenes, her life has taken a difficult – and often painful – course.
Discovering eight autoimmune diseases
Erica was nine years old when she was diagnosed with her first autoimmune disease – Juvenile Dermatomyositis. Appearing as a skin rash, she was misdiagnosed for one year and progressively became weak, lost flexibility and suffered from intense joint pain. At this time, she also developed Juvenile Rheumatoid Arthritis. By the time she was diagnosed, she could barely move without pain.
“I remember being unable to button my pants,” said Erica, reflecting on the excruciating pain she experienced. “I also couldn’t flatten my fingers on a table to get my nails painted, and I couldn’t cross my legs sitting on the ground.”
The next round of diseases came at the age of 19 – Vitiligo, which causes you to lose skin pigment; Alopecia, which causes you to lose your hair; and Hashimoto, which attacks your thyroid and causes extreme fatigue as well as weight gain, depression, join and muscle pain, swelling and other side effects.
“I was actually watching a show one day on TLC called ‘Embarrassing Diseases’ that featured a man with vitiligo,” said Erica, who remembers thinking how horrible it would be have the disease. “Two weeks later, I got my first spots of vitiligo. What are the odds?”
Just seven years later at the age of 26, Erica was hit with another round of autoimmune diseases, bringing her total count to eight. Most painful was Chronic Idiopathic Urticaria (CIU), or chronic hives, which results in red, swollen and itchy welts.
“I was freaking out,” said Erica, who said the red, puffy welts took over 90% of her body. “With autoimmune diseases, there is no ‘allergy’ so the hives can stay for weeks at a time, which is extremely painful.”
The biggest problem with CIU, said Erica, is the quality of life. This past Christmas she experienced her worst outbreak so far and remembers sobbing from the pain, wishing it would stop or that she could just be unconscious so she wouldn’t feel it anymore.
“It seems to get worse with every outbreak,” said Erica, who also shared that the medications seem to stop working after a while. “I don’t think anyone can truly understand how annoying and painful this disease is unless they have it.”
Alongside CIU came Angioedema, which causes swelling. Erica says her lips, feet and hands swell most commonly, but occasionally her eyes and face swell too. The pain just depends on how much swelling occurs. The last disease, and most recent, was Dermatographia, a condition that causes raised marks on the skin.
“The marks kind of look like writing,” said Erica. “I get them on the lines of my tattoos, which I’ve had for years prior to the disease, but I also get them other places.”
Throughout her experience with autoimmune diseases, Erica has been to see numerous doctors and specialists. As a child, she visited a rheumatologist weekly for a number of years. With her second round of diseases, she saw a dermatologist for her skin and hair and received cortisone shots in her head to help her hair grow back. She saw an endocrinologist for her thyroid. The last round of diseases were diagnosed by regular doctors after bloodwork.
Coping and living with autoimmune disease
According to AARDA’s President and Executive Director Virginia T. Ladd, “early diagnosis and onset of treatment can make a significant difference in someone’s chances of becoming disabled or suffering organ damage.” Even so, Erica has found it difficult to get an accurate diagnosis, sharing that all of her symptoms were misdiagnosed at first.
At the age of 13, Erica was extremely fatigued and ‘just didn’t feel normal,’ but the doctors dismissed it as growing pains. Years later, after developing Vitiligo and Alopecia, she was desperate for answers and noticed ‘thyroid’ popping up in her research. Since her mother had thyroid cancer, Erica asked her dermatologist to do some testing. Reluctantly agreeing, the dermatologist was ultimately shocked to see the results.
“The average thyroid levels are between 0.3 and 3, and mine was a 17,” said Erica, who shared that the doctor had never seen levels so high. “Once I began thyroid replacement medicine, I stopped getting any new vitiligo spots and my hair started growing back.”
Because of that, Erica emphasizes the importance of being your own advocate and believing in your symptoms. She also looks to nutrition and natural remedies for healing, taking probiotics and supplements to fuel her body and adding juice to her diet to reduce her hives.
“American doctors are trained to treat with medicines, but medicines do not heal our bodies,” said Erica who has done significant research into the impact of gut health on the immune system. “What we put into our bodies directly effects how our bodies work.”
Today Erica does her best to look like her ‘normal self’ by getting spray tans to cover her spots and wearing extensions to fill out her hair – two things she calls her ‘security blankets’ to help her stay confident. Even with those, though, Erica still struggles emotionally and physically.
“I feel like I pretend I am confident about it,” said Erica, who especially admires those with vitiligo who accept their spots. “But really it’s only because I am able to mask it. Anyone who has been around me knows how much it gets to me.”
As the co-founder of her own marketing agency, Erica has a lot of flexibility in terms of coping with her diseases, sharing that her team will pick up the slack on days when she can’t get out of bed. But it hasn’t always been that way. In fact, she’s lost jobs because of how often she’s had to call out sick in the past.
“I think the hardest thing is that most people will never understand,” said Erica, who has faced a lot of judgement for seemingly being ‘lazy’ and ‘making excuses.’ “I have days where I am extremely tired, days where I can’t get out of bed, days and weeks where I am covered in hives and I can’t do anything.”
Despite the worst of days, Erica says she wouldn’t have it any other way as her diseases have shaped her into the person she is today.
“Beauty and confidence comes from within,” from Erica. “I didn’t realize this until it’s all I had.”
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.