More Than a Number Campaign

How has chronic illness changed your life?

For me, it’s a constant process of learning how to be patient with myself and my body. I’m still working on learning how to accept my bad days and my limits. But at the same time, having a chronic illness has truly helped me learn how to appreciate the little things in life. Sending you all love and spoons 💕

This happened to me just a week ago.

I’ve been feeling sick for awhile. I’ve seen two doctors, my family doctor and my specialist. I told both about my symptoms. Both have given me antibiotics. This has been going on for three months. With no improvement.

I saw a doctor last week that actually seemed as confused and concerned as I was. She asked why they hadn’t done tests, why they haven’t referred me to a specialist.

I guess I was presenting my syptoms wrong, using the wrong words when talking to my other doctors.

Or maybe they just didn’t care.

Caption: 

Things you shouldn’t say to a person with a chronic illness 101:

Doctor’s office to doctor’s office. Each one with a similar storyline. I was experiencing severe pelvic pain for a few years; Still, to this day I do. At the time, no doctor was able to find an answer. Instead, my pain was continuously invalidated by medical professionals.

Their voices echoed in my head over and over again. I should see a therapist because my pain was not real. I was seeking drugs. I was too young to be this sick. The pain I was feeling shouldn’t be that bad. And my personal favorite, that I might have just been eating bad tacos all the time (yes, a doctor was completely serious when he told me this).

On good days, I sat wondering if I made my pain up. Maybe the doctors were right after all. But these doubts never lasted too long. The pain would always come back.

I often wound up in the emergency room, lying in a hospital bed, clinging to a thread of hope that maybe just this one time I would be taken seriously. Maybe if I was lucky, I would receive an answer.

It took a few years until I was able to find a doctor that treated me like a person and I was diagnosed with Endometriosis. Still, I am awaiting a diagnosis for an autoimmune-related disease (Yes, the classic “buy” one chronic illness get one free deal from hell) and I am once again in the process of finding a doctor who will listen to my voice and recognize my pain.

Unfortunately, this story is all to common in the chronic illness community. Time and time again, I hear of individuals with chronic conditions, especially young women, being told that their pain is not real. They, like myself, continuously find themselves being treated as a set of numbers on a chart rather than as human beings. Whether it’s being rushed out of appointments, not being taken seriously by medical personnel, or literally being called Patient Number 42 (the name an unconcerned doctor used to refer to his patient that went missing in a hospital I was at), this desensitization in the form of reducing patients to numbers is often very real.

This is why I chose to create the More Than a Number Campaign. The More Than a Number Campaign aims at emphasizing the faces that are behind chronic conditions through providing an outlet for individuals to share their own stories, submit their favorite Spoonie hacks, advocate for one another, and support one another through the everyday battles of chronic illness.

We are more than just a set of numbers on a chart. We deserve relief and we deserve to be respected and treated humanely. With the More Than a Number Campaign, our voices will be heard. This is just the start but it’s a step in the right direction.

With love and spoons,