Hi I’m Connie, 19, and I have battled Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CSF for short) for the last six years. There are many different names for these conditions, but I use ME/CSF 🙂
CFS is a persistent fatigue that affects everyday life, and doesn’t get better with sleep or rest. There is a laundry list of symptoms such as, constant headaches, short-term memory loss, muscle and joint pain, difficulty controlling body temperature and many others. I was diagnosed with ME/CSF in February 2011 after suffering with a lot of symptoms that just didn’t make sense!
ME is a whole other beast! NORD summarizes it as “An acquired complex disorder characterized by a variety of symptoms and physical findings potentially affecting multiple systems of the body.” As you can imagine, it’s not easy to reach a proper diagnosis. Especially in someone so young.
Living with a chronic illness is the hardest challenge I have ever faced. It’s a constant battle. Each waking moment I feel I’m at war with my body. My mind is full of unrealistic goals, ones I may never get to meet. One of the hardest parts about having a chronic illness is that it let me start with a normal life and in a matter of moments, the life I had hoped and dreamed I would always have was snatched away.
A lot of the things that brought me happiness now cause me sever pain and discomfort. For example, being active, keeping fit and being social was a big part of my life. Being with my friends and socializing was a great stress reliever. Being the captain of a football team was the perfect role for me. It was something I love to do. Now, it has become a footnote on a list of things that I just can’t do anymore. My social life, education and job opportunities have dissipated as well.
Everything I do requires careful planning and involves consequences. There is no “normal” anymore. It’s unbelievable hard at 19 years old to have to plan my entire day around how well my body is cooperating. After 6 years, I’m still in the process of accepting my illness, learning what I can and can’t do. Being a teenager makes me stubborn by nature. When I go out and don’t listen to my body, I pay the price the next day. Sometimes even that same night!
I struggle with accepting that this is now my life. When I ask people this question, they say, “Of course not! No one should have to accept it!” but I have to. How do I accept this is now my life for the foreseeable future? Another difficulty is what others think and say about me. A lot of people struggle to understand or even believe things they cannot physically see. For instance, if I had a cast on my leg, people wouldn’t have to think twice about how they’d act towards me. That is why we so often label our selves as “invisible illness warriors.” I am not willing to let myself become my illness.
Recently, I have become more open about my disability. I am trying to make others understand is a difficult task. This is why I’ve found it easier in the past to hide my pain and exhaustion because hiding how I feel is less complicated than trying to make others understand how I feel. I’m now ready to open myself up, to try to make others see what I really go through everyday. was Please feel free to follow my Instagram where I post daily videos about my day-to-day battle @memyselfand_m.e
Thanks again Connie! You truly are amazing to go through what you do at such a young age. If you would like to tell your story, please feel free to reach out to life with chiari on any social media platform!