It is an honor to volunteer and work for #MEAction. #MEAction came to me at a time in my illness when I was finally able to be online, do advocacy work, and find community. To understand why #MEAction’s mission and approach to activism is so important to me, we need to go back to my teenage years.
I had what I thought were opposing career goals. My first career goal was to be an advocate- specifically a congressional advocate for those who were not represented by big corporations. My ideas about who is not truly represented grew with age and maturity but that was my first goal. My other passion was to be a therapist/counselor. By the time I started college, I was pursuing my dream to be licensed counselor. During this time, I also developed a passion for community building. I wanted to work in a community where I could counsel, educate, and facilitate. I truly believed that people in communities wanted to help each other but often needed education or facilitation to do so effectively.
I had plans and passion. I was a 19 year old sophmore making all A’s and working to help pay for school. I was settling into social life in an relationship-oriented introvert kind of way. Then I got sick in January of my sophomore year.. I had all the signs of mono but did not see a doctor.
My beloved grandfather died early in the year. I added grieving and visits to stay with my grandmother to my to-do list of full time school and part-time work. I was tired and not feeling my best but I could make it work. Then on spring break during a service trip, I caught the flu. I dragged myself and a sick friend to my parents where they quarantined us in a room and took care of us. We were so sick. My friend got better. I never did.
I made it back to school. I finished the semester. I kept hearing, “Are you ok? You look so tired.” I tried to keep up with work and school and a social life plus still visiting my grandmother but I was floundering. I thought if I could just survive until summer, I would be ok. Summer came. I moved out of the dorm and back home. I started a new full-time job to go with my part-time job. I got so much sicker. I could not handle the 2 flights of stairs to get to the office I worked in. I tried to work out and felt like I could hardly lift my limbs. I was used to regular workouts. I was in decent shape with a bit of pride in the 6 pack of abs I had developed if you looked hard enough. I could not fathom what was wrong. The worst thing in my mind was mono. I was 20 and who thinks of lifelong illness at that age.
I hit a massive, unscalable wall. I had to quit work. I could barely walk to the end of my driveway. I could no longer blow my own hair dry after a shower. If I got up to use the restroom at night, I often had to lie in the bathroom floor to work up the energy to get back to my bedroom a few steps down the hall. I had horrible headaches. My whole body hurt. I had trouble sleeping. I felt awful all the time. The doctor ran tests. I was sent to an infectious disease doctor She ran tests. I was given a tentative diagnosis of Chronic Fatigue Syndrome and told to hope to be better in 6 months. The name in no way seemed to match the severity of symptoms. Later this would be changed to myalgic encephalomyelitis.
I never returned to college. I learned to live with the tiny bit of a life that I could manage. I married the most amazing man. We had met in college in preparation for that service trip – the one I got sick on. We carved out a bit of life. Then I got worse. We carved out an existence. I still do not know how he stood it. I was down to living in one room with blackout curtains. I left the house for doctor appointments and the occasional family event or shopping trip. We waited. We did not know what else to do. There was no cure. I was too sick to be online and find more info. I barely spoke on the phone and needed an ear piece to hold it up. I probably looked fine the rare times I left the house. No one saw my husband helping me undress and get to the restroom after these rare excursions, and I did not tell them. I thought they knew. I did not tell anyone about rocking in the fetal position from the pain. I did mention the horrible migraines because people at least had a frame of reference for those. Then I discovered we were having a baby. A dream I thought would never happen. It was hard. It was scary. I almost lost her but finally my sweet little girl was born. The pregnancy and first few months after her birth were the hardest of my life.
Somehow the reset of the immune and endocrine systems that can happen in pregnancy helped me. Pregnancy affects people with ME differently. Some get worse. This was just my personal experience.I could be online longer. Handle more light. Move a bit more. I grabbed onto any research about ME that I could. I found supplements that helped me a bit more. I met people online. I found others who actually understood this life.
It was during this time that I threw what little of myself I had to give into advocacy. I could not help myself. It is who I was meant to be. I learned a lot. I tried to balance taking care of me and my child, yet still allowing myself this time to volunteer and fulfill this part of me long stifled. After a couple of years, #MEAction came about. I started volunteering. I used what I had learned from previous advocacy efforts there. I was asked to help manage our state group. Then I approached Jen Brea about a pregnancy and parenting group. I had never felt as isolated as I did during my pregnancy. I did not want others going through it alone. I started admining that group. I stepped into congressional efforts and participated in #MillionsMissing. Then I started volunteering through social media for #MEAction. Last August, I was hired to be the social media coordinator for #MEAction. I also still continue to volunteer in my usual roles with the amazing Pregnancy and Parenting with ME group as well as #MEActionTN.
My job has ended up being more than I think any of us thought it would be. With a community that largely organizes and communicates online, we use social media a tremendous amount to communicate and to coordinate actions. Please check out our Facebook, Twitter and Instagram feeds, if you aren’t already a follower. In addition to the social media posts/tweets you see, I also gather social metrics and watch for ways to improve our communication. I help schedule article shares and pitch new ideas. It means online staff meetings, deadlines, spreadsheets, and constantly evolving technology.
When discussing what I do, I could tell you about the growth we have had or talk about our social metrics and analytics. However, what matters to me is the community. I am never more satisfied in my work than when I see someone say “I found my tribe,” “I needed to hear this today,” “I am so glad I found #MEAction,” “I feel less alone,” etc. Love of community and, specifically, the ME community is why I do what I do.
My job is to help the community communicate, organize and empower one another. I hope that we all find knowledge, strength, and comfort through our social media. I hope everyone rejoices to see the new people we reach. It is hard work and my health has paid a price. But it is worthy work and my spirit has reaped rewards. I think many of us would say that about our activist efforts. I have learned so much and am honored to work with the volunteers and staff through #MEAction. I am constantly in awe of the talent, intelligence, and wisdom I find here.
I hope that this helps you understand what #MEAction means to me. It has empowered me to be the person I was on my way to becoming before being derailed by ME. #MEAction empowers the people in our community through advocacy, education, awareness, activism, and through giving us the tools to create change.
We are all in this together. Let’s make sure all people with ME and related conditions have the treatment, care, research, and support they need. Join me and support #MEAction today.
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