Tired of Being Judged and Labeled

My symptoms began in childhood, but everyone said it was “growing pains". I went from doctor to doctor, and each one dismissed me. They told me it was all in my head, that I was depressed, that I was a hypochondriac who wanted attention. At one point I was even told I had fibromyalgia, but deep down I knew that was not the answer. I had a gut feeling that something else was wrong.

After years of being unheard, I finally gave up searching for help at age thirty. It was only after meeting my boyfriend at thirty‑four that things began to change. At thirty‑five, I finally received a diagnosis.

It took thirty‑five years to be believed.

What “equity” means in my story

For me, equity does not exist. People do not believe you when you are too young, too fat, or appear too healthy. The hardest part was getting a diagnosis, and even now that I have it, support from work is almost nonexistent. Many CEOs and managers simply do not care.

I am a teacher, yet my needs have never been accommodated. I could not stand outside for hours during athletics, and this was ignored. The fact that I am an excellent teacher meant nothing because I sat while teaching, which was against the rules. I was constantly in trouble for not being able to do what other teachers can.

No one has ever tried to make things equitable for me.

Day to day life

Most things are challenging. You wake up, stand up, and face the world knowing you are struggling, and knowing that no one cares. You still have to do your household responsibilities, your job, and your duties, and no one gives you a break when you are struggling.

If I could work flexibly and manage tasks in my own time, it would make a huge difference. But everything has a deadline, even something as simple as the dishes.

Hope and strength

I am still searching for hope and strength. My pet helps a little, but even then, I sometimes feel like I am neglecting her. It is hard to stay hopeful when every day feels like a battle you have to fight alone.

What I want others to understand about rare diseases

People need to understand that just as someone in a wheelchair or someone living with autism deserves accommodations, people with autoimmune and rare diseases need them too.

Our challenges are just as real, and in many ways even harder, because they are invisible.