8 Years On...
The end of August 2019 marks 8 years of chronic illness for me. I don't have an exact date, because it all started with a common cold; but the day before I woke up with that cold was the last day of health I've experienced since. I wanted to take this opportunity to reflect on my journey in those 8 years. Where it all began, and how I got to where I am now. I hope you’ll stick around for this, self-indulgent as it may be.
It's rather unsettling to think about the fact that such a life-altering experience started with nothing but a runny nose and a cough. Up until then, I had never experienced any physical symptoms that couldn't be explained by a naturally poor immune system, puberty, or depression. As a child I was far more prone to colds than my peers, and I even caught chickenpox twice. (That's a tragically funny story by the way - chickenpox caused me to miss out on my first birthday party, and my first day of nursery school.) It's perhaps worth noting that I do have a history of health problems in my family - but there were never any major warning signs, or cause for concern. I just woke up one day in 2011, at age 13, with a cold; and nothing was the same again.
At first, it just seemed like a bad cold. Then it developed into a chest, ear, and throat infection. I got prescribed a course of antibiotics, but they didn't quite do the trick. I did another course of antibiotics, but still no joy. It was third time lucky, and the infections finally cleared up. After that, I felt exhausted. They said, "your body needs some time to recover from the antibiotics, but you'll be fine". Then, a few months later, they said "it's post-viral fatigue. You'll be ill for about six months or so, but then you'll be fine." By Christmas of 2011, I was still showing no signs of getting better. I was tested for Lyme disease and glandular fever, but both came back normal. When February 2012 rolled around, I'd hit the six-month mark and they said: "okay, it's been six months... we're going to have to diagnose you with chronic fatigue syndrome."
They didn't give me many answers when I was diagnosed. In fact, I'd say they gave me more questions than anything. They said "Every year we see a few people - usually girls - who have the same symptoms as you. We’ve never heard of recovery taking longer than 4 or 5 years. We don’t know what causes it, and we don’t have any treatments to offer you or any advice on managing the symptoms. But, since your BMI is a bit over average, you should lose some weight and see if that helps. Okay, bye!”
Alright, I’ll admit I may have paraphrased a little - but I swear that’s not any kind of exaggeration as to the amount of information my parents and I were given. I felt like I’d had my world turned upside down; like I’d been flung off a cliff and landed in a lifeboat that I had no idea how to move. In one afternoon, I’d had years of my future taken from me.
My illness has fluctuated a lot over those 8 years. I’ve had multiple false alarm recoveries that have been followed by a massive crash. I’ve been almost entirely housebound, and I’ve been able to manage a part-time college course. But no matter how “well” I felt, my illness has always loomed over me, just waiting for an opportunity to creep its way back in.
I could talk till I’m blue in the face about the muscle pain, the brain fog, the bone-aching fatigue - but none of that means anything to you unless you have a point of reference. So I ask you, instead, to think of this illness as every heartbreak you’ve ever had. Every breakup, every crushing disappointment, every rejection. Every feeling of loneliness, helplessness, hopelessness, and frustration. Every moment of existential dread, and of self-doubt. This is what living with a chronic illness feels like. To me, anyway.
As if the symptoms themselves weren’t bad enough, I’ve also faced a lot of doubt about the validity of my condition over the past 8 years. I don’t think I will ever forget being told at 14 or 15 by a hospital tutor that I’d be making progress if I wasn’t so "cosy at home"; or the way I felt like my heart had been ripped out of my chest and stomped all over during my disability benefits tribunal in 2017. I’ve had people I actually knew personally accuse me of faking or exaggerating my symptoms. It feels like a punch in the gut to hear that, but all you can do is beat them over the head with your medical files then wheel off. Just kidding! I’ve never done that. Not yet, anyway... I’m happy to say, however, that research into and general awareness of M.E. has come an incredibly long way since I first fell ill. We’ve seen public denunciation of the theory that graded exercise therapy helps (it doesn’t), and Jen Brea’s documentary “Unrest” made it to Netflix. The “Millions Missing” campaign had events across the globe this past May for M.E. Awareness Day.
I can’t say for certain how much progress the world around me has made in how it treats my condition, but I know that I’ve seen a lot of progress. When I first fell ill I thought I was one in a million. Hardly anybody talked about M.E. in the media, and I wasn’t even clear on whether the condition was fatal or not. (It’s not.) But I’d like to think that if I were diagnosed today, I wouldn’t be left as much in the dark. I know that a lot of people still have to deal with doctors who don’t believe them, but I hope that on average the likelihood of that happening is going down.
This illness does get easier to deal with after a while. You learn how to read your body for symptoms and warning signs, you learn its patterns. You learn your own limits and you learn coping mechanisms. But it still doesn't make it easy. I wouldn't change my past, but I would change my future in a heartbeat given the chance. If you'd like to help brighten the futures of myself and many others with M.E., I would encourage you to donate to M.E. charities "Invest in ME" or "Solve ME/CFS Initiative". I've set up a fundraiser for Invest in ME on Facebook, if you'd like to donate here: https://www.facebook.com/donate/520962312008942/
I hold out hope that I will recover someday; both because the scientific research that's being done is extremely promising, and because without that hope I would turn into a shell of a human. Sometimes the hope of a better future is all that gets me through the day. These past 8 years have been monumentally difficult, in so many ways. Much as I can draw meaning and moral lessons from them like blood from a stone, at the end of the day it's just an illness that I wish I didn't have. I wouldn't change the past even if I could, because I am who I am only because of all those experiences. I know I may well have another 8 years of illness ahead of me, and there's nothing I can do about that. This is my life, whether I like it or not.
I know I have a lot to be grateful for - and I truly am. During the hundreds of days I've spent barely able to move from my bed, I've had a comfortable bed to rest in. Every day I've been unable to get food for myself, I've had a parent willing and eager to help me out. But I hope that for all 2920 days of heartache (give or take a few) that this illness has caused me, I will get to experience 2920+ days bursting with energy and full of pure, unadulterated joy.
Hugs,
Isabel xo
It's rather unsettling to think about the fact that such a life-altering experience started with nothing but a runny nose and a cough. Up until then, I had never experienced any physical symptoms that couldn't be explained by a naturally poor immune system, puberty, or depression. As a child I was far more prone to colds than my peers, and I even caught chickenpox twice. (That's a tragically funny story by the way - chickenpox caused me to miss out on my first birthday party, and my first day of nursery school.) It's perhaps worth noting that I do have a history of health problems in my family - but there were never any major warning signs, or cause for concern. I just woke up one day in 2011, at age 13, with a cold; and nothing was the same again.
At first, it just seemed like a bad cold. Then it developed into a chest, ear, and throat infection. I got prescribed a course of antibiotics, but they didn't quite do the trick. I did another course of antibiotics, but still no joy. It was third time lucky, and the infections finally cleared up. After that, I felt exhausted. They said, "your body needs some time to recover from the antibiotics, but you'll be fine". Then, a few months later, they said "it's post-viral fatigue. You'll be ill for about six months or so, but then you'll be fine." By Christmas of 2011, I was still showing no signs of getting better. I was tested for Lyme disease and glandular fever, but both came back normal. When February 2012 rolled around, I'd hit the six-month mark and they said: "okay, it's been six months... we're going to have to diagnose you with chronic fatigue syndrome."
They didn't give me many answers when I was diagnosed. In fact, I'd say they gave me more questions than anything. They said "Every year we see a few people - usually girls - who have the same symptoms as you. We’ve never heard of recovery taking longer than 4 or 5 years. We don’t know what causes it, and we don’t have any treatments to offer you or any advice on managing the symptoms. But, since your BMI is a bit over average, you should lose some weight and see if that helps. Okay, bye!”
Alright, I’ll admit I may have paraphrased a little - but I swear that’s not any kind of exaggeration as to the amount of information my parents and I were given. I felt like I’d had my world turned upside down; like I’d been flung off a cliff and landed in a lifeboat that I had no idea how to move. In one afternoon, I’d had years of my future taken from me.
My illness has fluctuated a lot over those 8 years. I’ve had multiple false alarm recoveries that have been followed by a massive crash. I’ve been almost entirely housebound, and I’ve been able to manage a part-time college course. But no matter how “well” I felt, my illness has always loomed over me, just waiting for an opportunity to creep its way back in.
I could talk till I’m blue in the face about the muscle pain, the brain fog, the bone-aching fatigue - but none of that means anything to you unless you have a point of reference. So I ask you, instead, to think of this illness as every heartbreak you’ve ever had. Every breakup, every crushing disappointment, every rejection. Every feeling of loneliness, helplessness, hopelessness, and frustration. Every moment of existential dread, and of self-doubt. This is what living with a chronic illness feels like. To me, anyway.
As if the symptoms themselves weren’t bad enough, I’ve also faced a lot of doubt about the validity of my condition over the past 8 years. I don’t think I will ever forget being told at 14 or 15 by a hospital tutor that I’d be making progress if I wasn’t so "cosy at home"; or the way I felt like my heart had been ripped out of my chest and stomped all over during my disability benefits tribunal in 2017. I’ve had people I actually knew personally accuse me of faking or exaggerating my symptoms. It feels like a punch in the gut to hear that, but all you can do is beat them over the head with your medical files then wheel off. Just kidding! I’ve never done that. Not yet, anyway... I’m happy to say, however, that research into and general awareness of M.E. has come an incredibly long way since I first fell ill. We’ve seen public denunciation of the theory that graded exercise therapy helps (it doesn’t), and Jen Brea’s documentary “Unrest” made it to Netflix. The “Millions Missing” campaign had events across the globe this past May for M.E. Awareness Day.
This illness does get easier to deal with after a while. You learn how to read your body for symptoms and warning signs, you learn its patterns. You learn your own limits and you learn coping mechanisms. But it still doesn't make it easy. I wouldn't change my past, but I would change my future in a heartbeat given the chance. If you'd like to help brighten the futures of myself and many others with M.E., I would encourage you to donate to M.E. charities "Invest in ME" or "Solve ME/CFS Initiative". I've set up a fundraiser for Invest in ME on Facebook, if you'd like to donate here: https://www.facebook.com/donate/520962312008942/
I hold out hope that I will recover someday; both because the scientific research that's being done is extremely promising, and because without that hope I would turn into a shell of a human. Sometimes the hope of a better future is all that gets me through the day. These past 8 years have been monumentally difficult, in so many ways. Much as I can draw meaning and moral lessons from them like blood from a stone, at the end of the day it's just an illness that I wish I didn't have. I wouldn't change the past even if I could, because I am who I am only because of all those experiences. I know I may well have another 8 years of illness ahead of me, and there's nothing I can do about that. This is my life, whether I like it or not.
I know I have a lot to be grateful for - and I truly am. During the hundreds of days I've spent barely able to move from my bed, I've had a comfortable bed to rest in. Every day I've been unable to get food for myself, I've had a parent willing and eager to help me out. But I hope that for all 2920 days of heartache (give or take a few) that this illness has caused me, I will get to experience 2920+ days bursting with energy and full of pure, unadulterated joy.
Hugs,
Isabel xo
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