My Journey to an Autoimmune Disease Diagnosis: Advocating for Yourself.

The Invisible Disease

For several years, I struggled with persistent symptoms that seemed to have no explanation. Tiredness, weakness, fever, brain fog—you name it, I felt it. I found it hard to concentrate, and even the simplest tasks became a challenge. Despite my repeated visits to my family doctor, every time I brought it up, I was met with the same answer: "It's probably just your anxiety."

It was disheartening. I felt as though no one truly understood what I was going through. But deep down, I knew something wasn't right with me. So, I kept pushing. Every time I saw my doctor, I brought it up again, hoping he might listen, hoping for answers. Yet, it always felt like my concerns were being brushed aside.

I started to doubt myself. Was I overreacting? Was it really just anxiety? Maybe my doctor was right. But the symptoms kept worsening, and I couldn’t ignore them anymore. I began to experience things I'd never felt before, like migraines that left me bedridden, and I could sleep for what felt like days but still wake up exhausted.

That’s when my mother-in-law shared some helpful news—her doctor was accepting new patients. I was hesitant at first, but something inside me told me I needed to try. I called the office and scheduled an appointment.

When I met with this new doctor, I felt a sense of relief wash over me. For the first time in years, I was heard. He took me seriously, ordered a series of tests, and referred me to a neurologist. I didn’t know what was going on, but I knew one thing: at least this doctor wasn’t dismissing my experience.

A few weeks later, I got the call I’d been waiting for. The neurologist informed me that I had an autoimmune disease. At first, I didn’t know what that meant. I had heard the term before, but I didn’t fully understand it. But the important thing was that I finally had a name for what had been happening to my body.

The doctor took the time to explain, in terms I could grasp, what an autoimmune disease is. In short, there are over 80 types of autoimmune diseases, including lupus, rheumatoid arthritis, multiple sclerosis, and Crohn’s disease, just to name a few.

What these diseases have in common is that the body’s immune system mistakenly attacks its own cells as if they were foreign invaders. It’s as if the body is in constant conflict with itself.

Another thing that’s common in autoimmune diseases are flare-ups—periods when symptoms become more severe. And when these flare-ups happen, it can feel like everything is spiraling out of control. Symptoms like anxiety, depression, exhaustion, brain fog, joint pain, and migraines are just a few of the challenges I face.

What’s even more difficult is that autoimmune diseases can affect different organs in the body. Some people need to see a rheumatologist, while others see an endocrinologist or even a nephrologist, depending on the nature of their disease. In my case, I’m under the care of a neurologist.

One of the most impactful things my doctor told me was, “We don’t know exactly what causes autoimmune diseases, and there’s no cure. But there are treatments that can help you manage your symptoms.” While that was tough to hear, I appreciated his honesty.

I remember asking him if there was anything I could do to help myself. His answer was simple yet profound: “Take care of yourself. Eat well. Rest properly. Exercise—but don’t overdo it. Reduce stress. And meditate.”

Since my diagnosis, I've felt empowered. Every time I go through a flare-up, I remind myself it’s part of the process. I don’t panic or let it control me. Instead, I reach out to my doctor, and together we manage the situation.

So, if you're dealing with symptoms that don’t seem to go away—whether it's fatigue, brain fog, or anything else—please, take charge of your health. Advocate for yourself. No one knows your body better than you do. If something feels off, don’t let anyone dismiss it. Keep asking questions, seek second opinions, and be persistent.

Because your health matters. You matter.

Takeaway

If you've experienced something similar or are struggling to get a proper diagnosis, I encourage you to be your own advocate. Sometimes, the answers are out there, but it takes courage and persistence to find them. Your health is worth fighting for.