Note: AW asked to be identified as “Autoimmune Warrior” to protect her privacy. Her story is shared here with her full support and blessing.
At 71 years young, AW has spent more than a decade learning to live with a disease most people have never heard of.
She has polymyositis — a rare form of myositis, which is a group of autoimmune diseases that cause the immune system to attack the body’s own muscles. The result is muscle weakness, pain, fatigue, and a long list of complications that touch nearly every part of daily life.
“I am determined for this disease not to take me all the way down,” she says. “I’m still here, and I made it this far. I don’t plan to quit.”
When Symptoms Were Called “Just Aging”
AW’s road to diagnosis was not a straight line.
Before she received her diagnosis, a doctor told her that her symptoms — trouble moving, pain, weakness — were simply part of getting older. She was told to expect this, to accept it, and to move on.
This kind of dismissal is unfortunately common among myositis patients, especially older women and Black patients, whose symptoms are too often minimized or dismissed.
Eventually, AW ended up in the hospital. She couldn’t breathe. Doctors discovered that her lungs were affected, and after a biopsy from her leg, she received her diagnosis: polymyositis. Her CPK level — an enzyme that signals muscle damage — was extremely high.
“Nobody told me what polymyositis was. What to expect. What I could do. I was told nothing,” she says.
She was sent home with a diagnosis on paper and medications to take. No explanation. No roadmap.
Living With Myositis Every Day
AW’s symptoms affect her from morning to night.
She deals with muscle weakness in her hips, thighs, shoulders, and upper arms. She has joint pain and stiffness, fatigue that doesn’t improve with rest, and shortness of breath. Chest tightness makes it hard to sit up or travel far. On a difficult day, walking from her chair to the kitchen sink leaves her out of breath.
“You wake up feeling pretty good, like you could take over the world,” she says. “And then the next day, you can’t raise your head up off the pillow.”
She also lives with arthritis, osteoporosis, depression, anxiety, and a sleep disorder — each one adding to the weight of the others. She experiences flares almost every single day. Managing her condition is not a now-and-then effort. It is her full-time reality.
Through it all, one thing keeps her grounded—her dog.
“I’m blessed that he’s a couch potato, and I’m a couch potato. We do very well together,” she laughs. “When I’m resting, he’s right on the side of me, and he’s resting too.”
Here’s a Pamphlet. Good Luck.
One part of AW’s story that doesn’t get talked about enough is what happened when doctors tried to explain her condition to her.
“The doctors would hand me a lot of printed information and tell me to read it on my own,” she says. “That was a problem for me because my concentration was off. I think I now understand what they call brain fog. Reading information was difficult for me.”
Difficulty thinking clearly, focusing, or remembering can be common symptoms faced by those with myositis and many other autoimmune diseases, reminding us just how challenging these conditions can be. But most patient education assumes people can sit down with a stack of papers and figure it out on their own.
For AW, that assumption left her without the information she needed most, at the moment she needed it most.
Advocating for Herself Over a Decade
AW has been taking glucocorticoids (steroids) since the day she was hospitalized. She has also tried six different immunosuppressive or biologic medications. Years of adjusting, waiting, and trying something new.
And she drove most of it herself.
“My doctor hardly ever recommended anything,” she says. “I had to ask him to try something different.” She describes her appointments as rushed and one-sided — short answers, little explanation, no discussion of what her day-to-day life actually looks like. Her doctor once walked in, typed something into his computer, and left without really talking to her.
When she went to physical therapy, she sent her therapist two short videos showing exercises she thought might help her muscles. The therapist told her he didn’t have time to read a text from anyone.
“I just think we’re not a good match,” she told him. “You’re the weakest link.”
What She Wants Other Patients to Know
AW doesn’t have a large support network nearby. There are no local autoimmune support groups in her city. She checks a Facebook group sometimes, but the hard stories can be difficult to read.
What she wants — more than anything — is a rheumatologist who specializes in myositis. Not just any rheumatologist, but one who truly understands polymyositis and dermatomyositis.
“A lot of that behavior from doctors comes from not knowing how to answer,” she says, without bitterness. “So they just leave you out there in the middle of the river.”
She wants other myositis patients to hear this: you are not alone. The disease is invisible to most people around you, and others may assume nothing is wrong. She knows firsthand how much that invisibility hurts.
She says she’s had to just overlook the ignorance, but that’s a difficult part also, because they call it the invisible disease.
Still Here. Still Determined.
AW and her husband — who passed away several years ago — spent most of their lives helping others. She carries that instinct with her still.
Even now, AW dreams of creating a program that would provide food and veterinary care for disabled veterans and seniors who want a pet but can’t afford one.
“What keeps me going,” she says, “is knowing that one day, this is going to make a difference.”
She describes herself simply: faith and grace, and grit and determination.
“I’m 71 years young,” she says, “and I still got a lot of rubber left on these tires. I plan to use it.”
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Interview with Autoimmune Warrior “AW”, who lives with myositis.
