Myalgic Encephalomyelitis is a chronic illness that you will never want to hear from your doctor or from a specialist. It’s the invisible monster that seeks out vulnerable, unexpecting victims and never let’s go. I never knew of its existence before being diagnosed, which is the case for a lot of people. Waiting for so long to find the answer to all your problems is one challenge, but discovering what you have is “incurable” is a challenge nobody ever expects. It’s a cruel twist of fate that leaves behind many regrets. Many questions go unanswered and the overwhelming storm of fear and uncertainty feels like it will never end. I often wonder what life would have been like for me now if this had never happened to me. I find myself thinking about what I did to deserve this and why it chose me out of everyone else on the planet. Let me tell you a story which unfortunately is very common in the world of chronic illness.
You sit in the waiting room anxiously hoping that you won’t be told for the hundredth time that it’s “all in your head” or that it’s simply a matter of “getting more sleep and exercise” and “eating your vegetables”. It’s been years of back and forth appointments. Always with the same problem and the same lack of understanding. You warily walk into the room and take a seat. They start by asking you if you have ever heard of a condition called ME. Your eyes begin to brighten up and you shuffle around in anticipation. You have heard about this somewhere before amongst all your research. In fact, a family member mentioned it to you a while back but you casually dismissed it. It’s such a surreal state of mind when you actually want to be diagnosed with something rather than nothing. Normally you would hope that things are all clear and you’ll get a clean bill of health but not in this particular case. When you have ME or similar illnesses like Fibromyalgia or Lyme Disease it’s a constant struggle to find the reason behind your suffering. Endless tests, hospital visits, appointments, online research, health books, new diets, yoga, meditation, group chats, pushing through it, medication and acupuncture are just some of the things you’ve tried and failed at. Getting some kind of label and a name to take the blame is the best thing you could ever hear at this late stage. You spring to life again when they decide at long last to give you much-appreciated diagnoses. You feel a strange sense of relief that you haven’t felt in a long time. You rub your hands together eagerly awaiting the next step. You wait for them to start bombarding you with all the ways in which they can help fix this unwanted issue. Patiently expecting them to suggest a new medication to take that will cure it. Unfortunately, that’s not what happens.
Instead, you watch in horror as they swirl around on their fancy leather chair towards the computer and casually begin typing the condition into Google. You silently mutter under your breath “that doesn’t seem right”. “Why would a highly trained professional health care provider have any need for a Google search?” Then the harsh reality hits you like the horrible gut-wrenching feeling when you accidentally misplace your footing walking down a staircase. “This person has absolutely no idea how to help me”. The horror continues as they turn back towards you and with sad eyes and a heavy heart, inform you that this chronic illness will require “management” but has no cure at this present time. You start to question it. You ask for every little inch of help and advice they can offer before throwing you out into the world to face it all on your own. That sounds a little bit overdramatic but that’s what it feels like and you can sense it becoming the most likely outcome. You leave the room feeling strangely more hollow and confused than when you went in. What do you do now? You know at long last what is wrong, but it’s incurable! For many of us, that story sounds spine-chillingly familiar.
The years passed by and here I still wait. Living with an incurable chronic illness. It’s like being completely lost in a maze of uncertainty. I never know what each day is going to bring. I can’t face thinking or planning about my future because I have no clue if I even have one. The future scares me. I get consumed by dark thoughts telling me that this is it. This is all I get from now till forever. It’s unfair beyond words but it’s real, and it’s my life now. People close to me feel helpless and strangers try and sell me their ill-informed advice. Voices come at me from all angles starting with “have you tried...” and ending with “get well soon”. I’m trapped in the same day endlessly on repeat. Going to bed with ME and then waking up with it over and over again. I ask others with the same condition about how long they’ve had to endure this. They talk back to me with grief-stricken voices saying “for as long as I can remember”. Any ideas of a life that I once believed possible has slowly begun to fade away but I refuse to believe that its game over.
I’ve had to change everything. Chronic illness is life-changing and shifts your perspective. The world becomes distorted as if you’re seeing it with brand new eyes. Now I have a new set of rules to follow if I truly desire a better quality of life. I’ve been forced into changing my way of thinking. Everything is now a challenge I have to face with every waking second. I live in the moment instead of living for the future. The littlest of things now hold more importance to me than I could ever have imagined. Now each moment I spend in a good and positive way means that I’m making the most of my life despite the illness. Everything has a whole new meaning now. I see achievement in the smallest of tasks like washing my hair or even just getting out of bed. I try my best not to feel any guilt when I have no other option than to rest the days away because that’s what my body needs to survive. I aim to take comfort and joy out of the simplest of moments and approach every little opportunity with gratitude. I have started to learn the significance of acceptance. Accepting that I have a illness and I have to find a way to manage it as best I can. I can’t go back in time and change the past. I can’t miraculously cure my incurable condition. What matters most is how I move on from here. It breaks my heart and the tears flow whenever I stop and think about what I could have been. But as long as I hold onto where I’m going, my future can slowly begin to look a little brighter. Hope is one of the only feelings we can keep a tight hold of when faced with an incurable condition. Hope creates warriors.
“Yesterday is not ours to recover, but tomorrow is ours to win or lose“ – Lyndon B. Johnson
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