Name: Kelly Sullivan Ruta Pronouns: she/her Age: 52 Home: Wake Forest, USA How many years sick?: 9
My illness was originally triggered by an Epstein-Barr infection. Prior to getting COVID, I had returned to 70% capacity from 40%. I was completely bedbound for 6 weeks and then 25-30% for ten months. Now I am at 60-65%, which I realize is a dream for some, but a nightmare for me.
ME has literally stolen just about everything from me to some degree. I was an athlete most of my life but now can’t exercise. The success of my small business has been limited because I can only work part-time. I can’t travel as much as I used to. I can’t do any physical activity beyond walking. I have to limit social activities.
I am lucky I have very supportive family, friends and colleagues. However I would love to challenge the “you don’t look sick” argument. I don’t look sick. But I am sick.
I mourn my vitality and dreams for my future. I have neither because I focus on survival only. Both of those things were central to my identity and the way I lived my life and engaged with work and people. I dreamed. I planned. I was excited for my future. I wanted to try so many new things after my kids grew up. Now I just make it out of bed and to 4 hours of work every day. An occasional night out with my husband or friends. Mostly movies, books and rest.
I am proud of my grit and resilience. There have been many days I wanted to go on disability and crawl into bed. But I continue to get up (when I can) and keep going. I treat it as if there is no option but to keep going. My mindset is relatively ironclad.
If a cure for ME was found tomorrow? First, I would sob. Then I would figure out how to pay for it immediately. Then I would get back to living fully and helping others.
Surrender is your friend. I am a strong personality and I pushed way too hard over these last few years. It really negatively impacted me. I hate that I can’t fight back but the truth is my way makes me sicker. Surrendering to what is will hopefully keep me here long enough to experience what might be.
As a #GlobalVoiceForME, what would I say to the world’s health authorities? I have been a public speaker for 30 years. Put me on that stage and they will not leave the same as when they walked in!
#GlobalVoiceForME Kelly Sullivan Ruta
It took Kelly 20 minutes to complete the questions. It was a rough day and if she’d had more energy and didn’t have to work, she would’ve written much more.
