March is Autoimmune Disease Awareness Month, but the reality is those of us who live with autoimmune conditions confront many challenges on a daily basis. Every day we fight to manage symptoms, balance medication side effects, and make all the right choices to keep our own bodies from attacking us.
I have polymyositis, a disease that makes my muscles so weak I can’t even lift my arms up to comb my hair or lift my leg high enough to step up a curb. And what my body allows me to do can vary dramatically from one day to the next, even when I’m considered to be in remission. Many times, what you see in no way accurately reflects how I feel. There is no cure for this and most autoimmune conditions.
This battle would be next to impossible for me to fight alone. I’m so blessed to have the support of my family and friends. My dad also happens to be my PCP. He fought so hard for me through the diagnosis process and while we tried to find a rheumatologist. My mom is a nurse and stayed home with me for almost two months when I was first diagnosed and couldn’t even dress myself. My friends from the farm took care of my horse when I couldn’t ride for several months and have been so supportive when I still have days where my body doesn’t want to cooperate. Knowing that I don’t have to face this disease alone is a huge weight off my shoulders.
If someone in your life is battling an autoimmune disease, I encourage you to support organizations like The Myositis Association. Help fund public awareness, patient support services, and research to improve treatment options and hopefully one day find a cure.
– Megan Smith, TMA support group leader
Find a myositis support group near your.
#myositis # myositisawareness #autoimmunedisease #polymyositis #mixedconnectivetissuedisease #autoimmunediseaseawarenessmonth
I have been recently diagnosed with Myositis and currently in treatment. I have so many questions I’d like to bounce off of others with more experience.
Hello Mark, We suggest that you join one of our support or affinity group meetings. Most meet by zoom. Here is our calendar where you can register for these meetings: https://www.myositis.org/calendar/
We also have an Annual Patient Conference September 7-10 this year in San Diego. These are a great way to learn more about your condition and also meet others who also live with myositis.