Meet Shade’ M.
“I believe there is power in numbers. If people are still asking what an autoimmune disease is, then we still have work to do.”
What has been your biggest challenge on your autoimmune journey?
The biggest challenge for me has been acceptance. There’s a saying within the autoimmune community where you “grieve your old self”. I struggle with this because it’s hard to get past how one day you were healthy and the next day you aren’t. I still have a hard time accepting my “restrictions”.
My doctor gave me a piece of advice which gave me a mental picture and helps me cope She told me to remember that I wake up with a half of tank of gas every morning. So I have to be strategic on who and what I put my energy towards. This has helped put things into perspective for me. It’s not that I can’t to do certain things, it just means I have to find a balance. I can still do X, Y and Z but I may only be able to do X one day and perhaps Y and Z the following day or later that week.
What has been instrumental in helping you navigate and adapt to living with autoimmune disease(s)?
I was blessed to start off with an amazing Rheumatologist from the very beginning. Autoimmune diseases are so complex and the diagnosis alone takes an emotional toll on you. I hear so many stories about the frustration of having a doctor who doesn’t listen to you or who doesn’t see your value as a patient. It makes this road much harder.
Even with amazing doctors, I’ve also had to do my own research and equip myself with the knowledge that wasn’t provided to me. My doctor didn’t explain to me that some of the foods I was eating could be contributing to my inflammation.
I’ve also connected with the autoimmune community and I learn from my fellow warriors everyday. I have an amazing support system but it’s so easy to feel alone because they can’t relate. I find that someone understands me within the autoimmune community.
What advice would you give someone who is struggling with an autoimmune disease(s)?
My first piece of advice would be, to remember your road is your journey alone. When I was first diagnosed with Mixed Connective Tissue Disease, (MCTD) I naturally joined a social group of people who were also affected by MCTD and although it had its benefits, it contributed to my anxiety in the worst way. Since I had just been diagnosed, I assumed my outcome would be similar to those who suffered the most. I hadn’t even been diagnosed for a month and I was convinced that I would be on an oxygen tank within the next few months. I didn’t allow myself to take it all in, I jumped right to the extreme end of scenarios ?.
I say all of this because, autoimmune diseases are unpredictable and we all experience different symptoms. I had to learn how to focus on my journey regardless of where it takes me instead of predicting my journey would be similar to another person’s journey.
Why is it important for those who are living with a specific autoimmune condition to join together and raise awareness about autoimmune diseases as a category?
It’s important because we still don’t have a cure. It’s important because everyone doesn’t know about autoimmune diseases. It’s important because it can still take on average 4-7 years to receive a correct diagnosis. It’s extremely important for women and especially for women of color because we are affected the most by autoimmune diseases. I believe there is power in numbers. If people are still asking what an autoimmune disease is, then we still have work to do.
Looking for more information?
Many of our partner organizations specialize in support for specific autoimmune diseases and have additional resources, research and care-management information available.