I’ve been involved with my local children’s hospital since about 1 year after I was diagnosed with Crohn’s disease at age 12. I got a special position as a member of the Youth Advisory Council. When I kind of aged out, I became a Young Adult Supporter (YAS)
(I have a secret theory that this position didn’t exist before my co-YAS and I aged up and it was a way for the hospital to keep us around)
But this was how I met Chronic Chronicles. Chronic Chronicles actually attended the same high school as me, but was a few years younger. We never connected until we met through the hospital. Chronic Chronicles’ experiences astounded me, I mean, no one knows what the EXACT cause of Crohn’s disease, but we have SO much more of an idea than chronic pain. It broke my heart when a plausible explanation of her pain arose then when proven wrong. The disappointment must be unbearable.
But we developed a great and supportive friendship and I owe a lot to Chronic Chronicles. I was diagnosed with Crohn’s disease 7 years before my friendship with Chronic Chronicles, which means 7 years until I had any sort of pain management. I told her my woes of endless hours of pain and the dismissive attitudes towards any inquiries into pain medication I had made. Chronic Chronicles gave me the BEST advice I have ever gotten about advocating for myself in terms of my pain.
I followed her careful instruction of keeping a pain diary for a week before my next appointment, detailing the scale of the pain, duration, trigger, and what I wasn’t able to do because of it. She told me to put my foot down, and not leave the appointment without a prescription and a plan.Like a good patient, I followed the orders and despite a little resistance from my doctors I was prescribed a pain medication that changed my life.The pain management has enabled me to do routine things like shopping, walking to and from work, staying attentive in class, sleeping or sometimes just sitting up.
The point is that I was at a loss of how to advocate for myself. I have made a name for myself as an advocate for youth patients (on a national scale, big deal, I know) but I didn’t know how to stand up for myself in an area I had no experience in.
Rather than relying on someone who was a medical professional or a specialist, my peer provided the best support I could ask for.
I owe Chronic Chronicles a lot and we’re celebrating my Crohniversary and her Painiversary together because that’s what friends do!