My Story of Chronic Illness

I have been chronically ill now for two years and only recently diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Over these two years, I have learned a lot about people. I have seen strength, ignorance, pity, among many other things. I have seen the strength in me and in the loved ones around me, but I have also been faced with the look of disappointment and pity as I tell people, no I'm not better yet. And no I won't be getting better.

I think one of the hardest things to deal with as a chronically ill person is not your condition, it's life and people around you. The society we live in was not made for people who are unhealthy, unhealthy seems to translate to weak and weak seems to turn into lazy. As a group of people, we are faced with little acceptance from the people around us, unless we are exceptionally lucky. For a healthy person, it is socially acceptable to take a week off work if they have the flu, they are given presents, get well soon cards, and best wishes. However, as soon as people find out you are not getting better, this is when the trouble starts. We are expected to carry on with life as normal, even though we are in pain every single day. I always find this is the hard part for people to understand, “you can't possibly be in pain every day, don't be so dramatic” or, “but you seemed fine the other day are you faking?” and even, “Oh but you're too young to be ill”. I think what people don't realize is every time you say something like this to a person that is chronically ill you are questioning something they have no control over, you are making their illness seem like it's something they have a choice in, something they can control.

Even though I am only recently diagnosed I knew what was wrong with me around halfway through the first year. I watched a video on YouTube made by Emma Blackery who had been diagnosed with CFS. I remember watching the video and crying, this is what I have, I know it is. I then started going to the doctors for help. I went through so many blood tests that I still have scars on my arms from the needles, I sat in doctors offices being questioned, scanned, poked, and prodded. My life turned into hospitals, doctors appointments, tests, and phone calls. I remember the phone call from my doctor telling me that nothing had shown up on the blood tests, again. I tried to hold myself together while I was on the call and hung up as soon as I could, I then burst into tears. Why was nothing showing up on the tests, why could no doctor help me, was this all in my head? After months of testing for diabetes, lupus, cancer, and other illnesses a doctor finally suggested CFS. However, I couldn't be diagnosed straight away, I had recently recovered from glandular fever and they wanted to see if my symptoms would disappear with time. So I waited.

While I waited I spent a lot of time in bed. And no, spending your life in bed is not fun or relaxing, it's a different kind of prison where you watch the world go by outside your window. I watched friends disappear from my life, my muscles waste, and my passion disappear. Being chronically ill is a constant compromise, do I go to the bathroom or make some food, because today I only have enough energy for one. While this seems horrible and sad I also found my true friends, the people who stuck by me and were always there. The family and friends that offered understanding and care. I also discovered that while my body may be weak, I was becoming stronger as a person. I was determined not to let my illness become me.

After a lot more doctors and a lot more time spent in bed, I was finally transferred to a specialist hospital. From here I received a caring doctor that diagnosed me and actually taught me about my illness. The hospital even set up group talks with other people that had the same illness as me, I was amazed. For the first time since I had become ill, I felt believed, I felt sane, felt even slightly normal again.

Since being diagnosed I still spend a lot of time in my bed, and some days it still feels like a prison. But with the help of those around me, I'm slowly gaining confidence in my body again, slowly starting to feel like me again and don't even need a walking stick to walk anymore. It's the little victories with this life. And I am determined to make as many more little victories as I can.