What has been your diagnosis journey? Our patient advocate Lana describes hers.

If you were reading a book or watching a movie about a person with a disease, the main character’s chronic illness would have some dramatic beginning: a fall, an accident, a lump, or a call from the doctor about a test result. But in real life, chronic illness doesn’t always work that way. In fact, most of us got sick gradually and then suddenly. We usually can’t pinpoint an event in our lives when the onset of symptoms started.

My Story

When I tell my story, I tell people I have been sick for a long time—long before any doctor diagnosed me. I identify the start of my symptoms by looking back at my mid-20s when I had to overcome some of the most stressful events of my life. Shortly after, I developed debilitating fatigue and always felt like I was coming down with the flu. I look back at the years that followed, when I endured muscle and joint pain, headaches, and unrelenting chronic fatigue.

When no medical tests gave answers, I was given medication for anxiety and depression. At some point, my doctors made me believe that my symptoms were all in my head. And another benchmark came in 2006 when my gallbladder stopped functioning.

I remember being at my wits end and crying to yet another doctor. I begged him to believe that my symptoms weren’t all in my head. Fortunately, he did, and after numerous inconclusive tests and one positive nuclear medicine scan, I was told my gallbladder was the source of all my problems. My gallbladder was removed, but my health woes didn’t end. I spent most of my days with a low-grade fever, flu-like malaise, dizziness, headaches, and confusion all the time, in addition to pain. There weren’t any answers because it was hard to determine what was wrong when I wasn’t suffering from painful gallstones. That was my reality and the gradual onset of my illness for the next two years that followed.

In September 2008, shortly after my son was born, I awoke unable to walk or use my hands because my fingers were curled up. That was the sudden onset of serious problems regarding my illness. And suddenly, my world was no longer the world I knew. It wasn’t long before I was diagnosed with rheumatoid arthritis (RA) and fibromyalgia.

I finally had answers—and some hope—but that didn’t last.

I was given medications that were supposed to make me better within a few weeks but I didn’t get better. I got worse. My joints and muscles hurt day in and day out and I could barely walk. I had excruciating headaches and I was dizzy all the time. I had falls and fainted on at least two occasions. And there was constant itching and the feeling like I was being stabbed by a thousand needles.

The truth is, back then, I didn’t know how to be sick. I didn’t know what my diseases meant and how to live with them successfully. But with time, I learned all I could about my illnesses and I actually got better. I finally had a life that resembled some sense of normal. I changed my diet, became more active, and worked with my doctor to find more aggressive ways to treat my RA and fibromyalgia.

I may never really understand what is happening with my body and I still mourn not being healthy, but I don’t take anything for granted. In my mind, I can still be the person I was. I have found a new life for my creativity and I find solace in my writing and spending time with loved ones. I try every day to find my new self because chronic illness may have changed my life but it doesn’t get to destroy it.

This is who I am and this is the story I get to tell. I got sick gradually and then suddenly, and then I taught myself to get better.

What’s Your Story?

One of the hardest things about being chronically ill is that most people view what you are going through as inconceivable. And that is if they believe you at all. It takes an average of nearly five years for patients with autoimmune diseases and/or fibromyalgia and up to five doctors to get an accurate diagnosis. Most patients consult with dermatologists, rheumatologists, endocrinologists, immunologists, and neurologists and still end up empty-handed. And other diseases often go ignored by medical professionals for years.

Being sick can be a lonely experience, and trying to be listened to and understood by the medical community becomes your entire world. You must learn to advocate for yourself and stand up against ignorance and indifference from everyone, including the medical community.

Make the choice not to be deterred from finding answers and getting the best treatments available. Don’t let your fears of someone telling you you’re wrong or making it all up overcome you. You know your body and the reality of your disease better than anyone else. Do your research and continue to stand up for yourself.

We all have a story to tell. What’s yours?

To learn more about coping with arthritis:

Five Ways I Became an Expert on My Chronic Illness
Tips for Coping with Chronic Pain
Coping with Chronic Illness in Marriage