We want to honor volunteer Holly L. this month for her dedication to building an engaged, informed community for people with myalgic encephalomyelitis through her work managing the #MEAction TN Facebook Group, and the Pregnancy and Parenting with ME Facebook Group. Holly also works behind-the-scenes to keep the #MEAction Facebook page up-to-date with the latest science, policy, commentary, actions and personal stories affecting people with ME.
It’s clear from her online presence that Holly is a wonderfully creative, kind and upbeat person who is dedicated to the ME community. Holly has had a long, painful struggle with the disease since getting sick 22 years ago, and she generously shares her experiences and knowledge with a spirit of openness, humility and strength.
What made you want to get involved with #MEAction advocacy?
I have always appreciated that #MEAction exists to empower each of us as individuals and help us come together as a group. It has helped my thinking to go from, “I wish someone would make that better” to, “How can I help to make that better?” I was involved in helping manage an international advocacy effort when the kickstarter for Canary in the Coal Mine came on the scene. I watched as #MEAction was formed and signed up right away. I have a passion for advocacy but wanted guidance and tools to help me grow. While the platform provided the tools, the people provided the encouragement that my voice was worth hearing and my story worth telling.
Tell us a little about the experience of this advocacy work. What have been the highs and lows?
I became sick in 1996. I saw some of the earlier awareness efforts and the difficulties in reaching people with ME. For me, in those days being on the computer meant a dial-up connection and sitting at a desktop. This was not possible for long with my level of sickness. I became very sick and left the online world almost entirely until closer to 2011. What a change! I came back to a much more active community and was thrilled to learn from people who had been pushing forward in advocacy work.
After watching and learning, I jumped in feet first to help in what became a well-known international advocacy effort. My co-managers and I were able to keep our names quiet and pushed forward with our work. We learned as we went and I count these people as lifelong friends. This was my first real experience with watching people push to crash because we believed so strongly in our cause and the person we wanted to help. I watched as my co-managers crashed and had to pause their work as their life was so severely impacted by their advocacy efforts. It was eye-opening the toll paid by the ME community. It has helped me to always emphasize health-first in advocacy efforts with others.
It was during this time, that I fell in love with the ME community. I have had the pleasure to watch people daily give what little energy they have to encourage and help others. I have seen such selflessness and beauty. The talent in our community is astounding and it is so heartbreaking how this illness often keeps those talents from being seen. My experience has been overwhelmingly positive and for that I am truly grateful.
What is your story with ME? What was life like before you got sick?
I was in college when I became sick. I was a perfectionist that always had to have the A. I worked part time and was active on campus. It took the time period of one semester for me to go from busy college student to living at home and spending most of my time in bed. I felt sick and wondered if I might have mono. Then I caught the flu. After that, I somehow managed to claw my to finishing my classes. I remember people kept coming up to me and saying, “You look so tired.” I thought if I could just get to summer break, it would get better. I worked full time during summer break. I remember, finally, one day having to pull myself up hand over hand to get up the staircase to my office. I was not sure I would make it. Something was so wrong. That was the last day I ever worked. I finally went to the doctor. In my mind the worst it could be was mono. I was 20. The lab work and doctors visits began. The initial lab work looked just fine.Yet, I was getting worse by the day. I hurt all the time. I had insomnia. I could hardly walk to the end of my driveway. The headaches were miserable. I lost the ability to read. My cognitive ability and energy were just not able to handle a book. Eventually my physician diagnosed me with CFS. I had to take a leave from school. A leave I thought would be one semester became years….maybe a lifetime.
I married a truly wonderful man about 3 years after becoming sick. We had a time period where while I was extremely limited, I did manage some shopping and basic tasks. In time, I became more severely ill. In bed 23.5 hours a day in a dark room able to do nothing productive. I left the house maybe twice a month. I could not cook or clean. Showers were infrequent. Productivity was not an option. My sole purpose was to breathe through the severe pain and wretched symptoms and hold on for those good moments. Hoping for a better future one day.
What gives you hope?
Research. Other advocates and activists. Healthy allies. A beautiful community of people that build up one another. That gives me hope. What gives me strength is my family and my friends. All of these people help give me joy and purpose.
Get involved. Do not think that you cannot make a difference. Jump into a support group. Find your local advocacy group. Listen, learn, and then speak up! You have a unique story and unique talents that are needed. If you are too severely ill to do these things, please know that those of us who can are holding you in our hearts. We will be here to magnify your voice.
Learn more about #MEAction’s advocacy and support groups here.