2020 has made it hard to connect. There were many months that the best I could do was pick a local charity to send money to each week. Sometimes I took food over to the local food bank. Being a social activist is something that matters to me and is a part of who I am. With everything that has happened this year, it would be easy to give up. However, contracting Covid-19, connecting with other Covid survivors, and speaking with journalists around the country reminded me what I need to be doing. I need to be using my story and my voice to educate others. I need to use my knowledge, my experience, and my communication skills to create positive change.
Positive change is where it is at for me right now. There is so much negativity. I don’t know why anyone would purposely want to get caught up in it. Instead, I have used this time to look at ways I can make inroads in our society that will help others. I have spent a lot of time educating myself about Covid, connecting with other patients, talking to doctors and specialists, and sharing my story. This story is still developing; both for me and other patients. As I watch positivity rates surge and hospitals reach capacity I am so saddened. It did not have to be this way.
Through all of this, I am still an arthritis patient. I have both Ankylosing Spondylitis (I am gene positive for HLA-B27) and rheumatoid arthritis. Last year I raised a considerable amount of money for the Arthritis Foundation when I ran the Chicago Marathon. I was thrilled to be able to bring attention to the needs of arthritis patients like myself and my daughter. My daughter and I have been watching the news closely. We both have grave concerns about the future of the Affordable Care Act and the protections it provides those of us with pre-existing conditions. We have been promised a replacement plan for four years, and I have yet to see this replacement to comment.
With the possible changes to healthcare in mind, an interesting opportunity was presented to me. The State Advocacy Committee Chair for the Arthritis Foundation reached out to see if I would be interested in joining the State Advocacy Committee in Illinois. Last night, I had the pleasure of attending the informational meeting with advocates and interested advocates across the country. We learned how our work can influence real legislative change for arthritis patients at the state and federal level. Fellow advocates shared how their personal stories impacted bills in their home states, and how we need to build relationships with our legislators to advocate for ourselves when no one else will.
Without a doubt, this is the work I want to be doing and I am thrilled to be a part. This story is also a work in progress, and I cannot wait to share more.