By Irene, Sarcoidosis, Canada, February 29, 2020
I shared this photo on Facebook in early 2017. I was trying to own it. It is the scar I received as a result of the biopsy surgery that confirmed my diagnosis of Sarcoidosis. These days, having a scar is the least of my worries. I still struggle with pain and fatigue. I have become a spooner (a person who counts spoons as units of energy), carefully considering what I can do in a day and how many spoons it will cost me. I am still able to work full time but only because my son and daughter-in-law moved home to take of the majority of the house and yard work, grocery shopping and cooking. I am still hopeful for remission but most days, I would just like to have one more spoon.
I noticed a twitter post from SarcoidosisUK that said that having a rare disease is lonely and scary. This is so true. I am the only Sarcoidosis patient that my family doctor cares for. The thoractic surgeon who did my surgery had three before me. My care coordinator is a Rheumotolgist and has had a handful. When my family doctor is unavailable, I go to a walkin clinc run by the team he belongs to and try to get a particular doctor who knows about Sarcoidosis (because his brother-in-law died from it) who checks everything just in case, which is scary but better than a doctor who has no idea. That is the scariest thing of all, that the health care professionals (other than my care coordinator) I see are not sure or maybe even guessing.
Its lonely because my world has become so small. There are lots of things I would like to do - have coffee with friends, go out for dinner, attend an event, travel out of town to visit my daughter, that I just don't have the energy for. And when you say to people, I have Sarcoidosis, they don't know what that is and I get one of two responses - "Well, at least it is not cancer" or "but you don't look sick." Thank goodness I don't look like I feel most days and yes, I am very grateful that it is not cancer. It would just be great if folks tried to understand just a bit more.
But, it is not all doom and gloom. I have learned that I have value simply by being me (thanks to my children) and not because of what I do. I have learned that I am worthy of receiving help and support and that it is okay to need it. Having to slow down has helped me to appreciate simple things like a good book, a great cup of coffee and the company of those who love me. Also, 600 thread count Egyptian cotton sheets and 12 pillows are awesome for naps!
Happy Rare Disease Day! Love to all my Sarcoidosis brothers and sisters out there, I hope today was one of your good ones.