I wrote this post 3 years ago, before a pandemic brought death and chronic illness into the daily worries of regular, healthy people. But I want to share it again now to help everyone who may face the terrifying long-term impacts of COVID-19 complications.
Chronic and invisible illnesses have always been so widespread that they affect nearly half of the population.
But now “Long COVID” and experiences of countless people not properly recovering from COVID-19 have heightened discussions about the chronic illness that I have suffered from since 1988.
I have Myalgic Encephalomyelitis (ME), often referred to as Chronic Fatigue Syndrome (CFS) or ME/CFS.
If you have never heard of ME, I encourage you to watch this TED Talk by Jennifer Brea.
Thirty Years Later – The Story I Never Told You
I have been blogging for eleven years, but I have never told you my story.
I have told you about my daughter’s Stereotypical Movement Disorder.
I have told you about my son’s struggles with ADHD, anxiety/mood disorder, and sensory processing disorder.
But I haven’t told you the story of my illness…
The story of how at 14 years old my identical twin sister, Susan, and I met a fork in the road.
She got to go one way and I was forced to go the other.
Considering I am a blogger and have shared about most aspects of my life with you, it is strange that I would have kept this to myself. Because really, this story is the one that has defined my life. It is the one that has had the largest impact on who I have become.
But I was worried what you would think of me — if you would question my sanity, if clients would think I was too sick to do my job, if people would think I was weak.
But this past week, when my friend, author and photographer, Tasra Dawson, along with her filmmaker husband, Ron Dawson, launched a Kickstarter campaign for their new documentary film, Invisible Illness, I realized it was past time that I found the courage to share my story.
I was fourteen years old.
I was only in the ninth grade, but I was already a veteran Type A, over-achiever. My perfectionism had taken root in me as early as grade school.
By January of 1988, I was well acquainted with the fear of failure and the need for approval.
I needed to get straight As. I needed to study for as many hours as I physically could. I needed to succeed.
I planned on going to university and getting a graduate degree — I just wasn’t sure in what yet. But I had to make sure I was on the path to it. I had to make sure I had perfect marks.
I remember at the time Mononucleosis was going around the school. My friend’s sister had fallen ill and was out of school for two months. I was stunned by the idea of missing two months of school. “I would kill myself if that happened to me!” I thought to myself. “That would truly be the end of my world.”
But then, as I left my last final exam and jumped into the car to head to the airport for a short trip to Quebec during semester break, I felt my throat getting sore.
I mentioned it to my parents, but I didn’t think too much about it.
There was a terrible influenza outbreak that month, but I had never had the flu before. I didn’t even know the last time I had had a fever. I wasn’t worried.
But by the time our plane landed in Quebec, there was no denying something was wrong with me. My head was dizzy and reeling. My throat was on fire. I was weak and exhausted.
The next twenty four hours were a blur of sleep, fever and nausea. We had landed in Montreal but our plans were to travel on to Quebec City.
My parents didn’t know what to do. Was it just a really bad cold? Was it influenza? Did I just need to sleep it off?
Somehow, they got me to Quebec City. When we arrived, I was so weak I needed help to stand up.
I can still remember how I felt as I tried to walk to the hotel in the underground passages that cut through the frozen city.
I felt like I was falling, collapsing under the weight of this foreign heaviness. I had never experienced any sickness so harsh and punishing. As I leaned on my parents, I began to get scared.
Something was terribly wrong.
Once they got me to the hotel room, my parents settled us in and my family began the routine of one person staying with me while the others went out and tried to enjoy their vacation.
My mom silently prayed that the illness would pass quickly and that my twin sister, or my parents, didn’t come down with it as well.
But no one else got sick. It was just me. And I could not get better.
The mysterious illness continued to ravage me. I grew sicker and weaker, with overpowering nausea and relentless diarrhea.
We were sequestered in that hotel room for three weeks before I was able to make the journey home — in a wheelchair by then.
I was pale and weak and beaten.
But it had to end soon, hadn’t it???
The short story is — it didn’t.
Every morning I woke up assuming I would finally be better. But every morning my dizzy mind, my weak body, my sick stomach, and my volatile intestines reported that, no, I was not better.
We were more than a month into the second semester at school, and I still hadn’t returned.
By Easter, my pediatrician admitted me to Children’s Hospital and they began tests to rule out diseases like Crohn’s Disease, Ulcerative Colitis, etc. The illness had attacked my GI tract so significantly they suspected inflammatory bowel disease. But there were so many flu-like symptoms that they were confused.
Once they ruled out bowel disease, I remember the psychiatrist team coming to talk to me — telling me that sometimes when we are upset “our tummies can get upset.”
I was furious. I knew what stress and worry was. Yes, I was an over achiever. Yes, I was a worrier.
But what was happening to my body was not from stress or worry. It was something far more overpowering and severe.
This illness was not created nor perpetuated in my mind.
I knew a virus or infection had done this to me and to prove it, I had an identical, just as stressed out and hard working, twin sister, who had not gotten sick and was healthy.
I was sent to the Infectious Diseases specialists at Children’s Hospital and was eventually diagnosed with Post Viral Syndrome.
The doctors told me that since I was a child, I had a good chance of recovering. They sent me home to rest, telling me that hopefully by September I would be strong enough to go back to school.
But September came and I was not better.
I began what would become the pattern for the rest of my high school years. I would attend one or two classes for a couple months, but then I would get too sick and would be back at home and in bed until the end of the semester.
My school knew what a hard working student I was. So they were always supportive and accommodating while I did my best to complete my schoolwork from home.
I was still convinced that I was going to get better and I was determined to have all the courses and marks I needed to get into the University of British Columbia, where my brother attended and my twin sister Susan was also planning to go.
But my illness got worse in my late teens. Not only was I not able to go to UBC, on my twentieth birthday I was being fit for my own wheelchair so that we could stop spending money every month on the rental one we had for years to help me when I was too weak to walk.
By this point in my life, it was getting too much.
I was done. Exhausted. Tortured by being trapped in my bed while my friends and my identical twin sister were off building their lives, attending university, having fun!
I still couldn’t believe this had happened. WHAT had happened?!? This was all some insane nightmare!
I wished I had an illness diagnosis that would give me an “end date.” I just couldn’t imagine sixty years living in my bed, sick and alone. It was terrifying. I wanted answers.
At least if I had an illness or disease that doctors understood — even a terrible one — I would have answers!
People would understand what was wrong with me — I would understand what was wrong with me!
This is My Life
It has been almost thirty years since that virus hit me, singling me out from my family and friends and altering my life forever.
I am still sick, living with this bizarre invisible illness. But I’ve managed to create a wonderful life… despite my health problems.
While my original diagnosis in 1988 was Post Viral Syndrome, over the last three decades the medical and research community have continually been renaming and reevaluating their diagnostic criteria for chronic illnesses like mine, including chronic illness that began with an acute viral infection, as mine did.
There are five competing names currently in use. In Canada, the most commonly used names for this disease are Myalgic Encephalomyelitis, abbreviated as ME, and Chronic Fatigue Syndrome, abbreviated as CFS. Quite often, you will see the illness referred to as ME/CFS or CFS/ME.
After decades of research, experts now believe that something called central sensitization is at least partially to blame for ME/CFS. “Central” refers to the central nervous system, which is made up of your brain and the nerves of the spinal cord. “Sensitization” means that it’s become hyper-sensitive.
They also believe central sensitization is what makes ME/CFS so similar to fibromyalgia, which shares many of the same features.
The CDC says the first credible evidence of a biological basis for this condition came in 2006, when 20 researchers from different specialties each linked the illness with genes involved in the sympathetic nervous system and the HPA axis. These genes control how your body responds to things like injuries and stress. source: VeryWell — What is Chronic Fatigue Syndrome
One of the other common names for the illness, CFIDS — Chronic Fatigue and Immune Dysfunction Syndrome, refers to the dysfunction of the immune system.
It appears that a large percentage of sufferers became sick with an acute viral onset, leading many researchers to hypothesize that some cases are a result of abnormal reaction to infectious agents such as enteroviruses, human herpesvirus 6 (HHV-6), and Lyme disease.
Although studies haven’t been able to conclusively link the illness with any specific viruses, multiple studies do lead to the theory that sufferers may have chronically active immune systems — essentially our bodies think we are fighting off infections whether we are or not.
The misnomer of “Chronic Fatigue Syndrome” has been so insulting and damaging to those of us affected by this devastating illness, that I will rarely use it. It is like calling pneumonia Chronic Coughing Syndrome.
I cannot even begin to count the times I have had people say, “Chronic Fatigue Syndrome?!? I must have that. I am tired ALL the time!”
I. Can’t. Even.
And so I don’t. I rarely mention that I am ill and keep my struggles to myself. My family and close friends know what I go through, but that is all.
If I do have to admit that I am sick, I will simply say that I have an immune disorder.
Mercifully, over the years I have gotten stronger and healthier. I have done things I never thought I would have been able to.
I got married and had kids. I have traveled and worked. I have lived a good life despite this frustratingly weak body of mine.
I have learned to live within my limitations, budgeting my energy and time, dealing with pain and exhaustion, and making due with “less.”
Learning to Thrive Despite Chronic Illness
At twenty years old, I was desperate.
I was young — I was supposed to be starting my life as an adult. I was not supposed to be stuck inside a sick, useless body.
So I become obsessed with “getting better.” I was desperate for a cure. I had promised myself that if I didn’t get better, then I would kill myself.
But eventually I had to stop driving myself mad.
I realized that the only option I really had, other than going crazy and killing myself, was to accept my situation.
I decided I had to find gratitude and joy where I was, whether or not I was suffering.
I had to stop focusing on my illness as something I needed to be healed from and instead accept it as “my handicap” — limitations that I had to learn to live with.
It was that change of perspective that helped me move on and have a fruitful, peaceful life.
By continually focusing on what I DID have, rather than on what I did not have, I released myself from so much frustration and pain.
Please don’t get me wrong — I still had, and continue to have, moments of anger and disappointment that I don’t get to do all the things I want to do.
I haven’t gone for a run or “worked out” in thirty years!
For every day I go out in the world and “pretend” like I am normal, I have to pay with days of pain, nausea, and dizziness.
I miss out on so much of my children’s lives because I am in bed, lying in a dark room, too weak or dizzy to even cope with daylight, let alone getting up and playing or going to the park with them.
But, I budget my time and my energy. I make sacrifices so I can splurge a few times a week. We all make do with “less of me.”
Thankfully, I have my mom and my twin sister who cover for me constantly.
Honestly, I would never have even attempted getting pregnant and having children without their support. I simply cannot imagine living this life without my twin sister, Susan, and our incredible, selfless mother.
Together, we run our business, raise our kids, and manage our busy lives.
It is team work.
They have propped me up and helped me walk since this all began in Quebec City so many years ago.
And I am so very, very grateful.
Tips for Living with Chronic Illness
I have lived with my chronic illness for three decades. It is never easy, but here are some of the things I do to make my life fabulous DESPITE my many physical limitations.
1. Assemble a Supportive Medical Team
Finding supportive, knowledgeable doctors and therapists can be challenging, to say the least. But don’t give up. There are resources and good people out there who can help you get the treatments you need.
Also, remember that all of your needs may not be met by just one doctor. You may need a number of specialists and/or therapists to address your different issues and symptoms.
If you are too sick and overwhelmed to oversee your medical care, consider reaching out to someone in your life to be an advocate for you and to help you as you deal with appointments and insurance companies.
2. Allow Yourself to Grieve
Illness has ROBBED you of many things.
It is okay to be angry, to rage against the hand you have been dealt.
You need to grieve what you have lost — and that can be a long process that happens in different stages over the months and years of your illness.
But eventually, you will be able to look beyond the losses and the pain, and find pieces of your life for which you can sincerely be grateful.
There are so many resources and experts available now online. I wish I had had the internet when I got sick!
One helpful website for all kinds of medical conditions is Verywell. They have a robust and thorough section on CFS and Fibromyalgia, including this post on processing the losses from chronic illness, Living With Someone Who Has Fibromyalgia or CFS.
3. Practice Gratitude
When I was home-bound in my late teens and early twenties, people would ask me why I wasn’t depressed. (I didn’t experience clinical depression until I got pregnant with my first child.)
My answer was that every day I watched the world news and I recognized that my suffering was nothing compared to what so many in the world were enduring.
Yes, I got discouraged, desperate and I even wanted to die, but eventually I would find my way out by practicing gratitude — tangibly focusing on what I had and not on what I did not have.
PLEASE REMEMBER: The practice of gratitude CANNOT heal clinical depression — nor will it save you from anger, frustration, and grief. Our emotions and our losses are real and we must accept and process them.
Since the birth of my first child, I have been medicated for depression and anxiety. Without those medications, I would not be here.
All the gratitude and meditation in the world cannot fix what is chemically wrong.
Please take depression and anxiety seriously and do as your doctors recommend.
4. Make a Plan that Works for You
I can’t live a “normal” life. I can’t go to bed at 11pm, get up at 6am, take the kids to school, go to the office, come home and make dinner, do homework with the kids, have sex with my mate, and go to bed at 11pm, ready to start it all over again.
I might make it two or three days — and then I would die, or crawl into my car and curl up in the backseat by ten am.
So, I have strategically planned a life that is not normal, one that works within my energy and health limitations.
I have been blessed to be able to do so — and I have had family around me that has allowed me the freedom to look after my health.
I understand that it is much easier to say “work within your limitations” than it is to actually have a life that allows you to do that.
But, as best as you can, try to adjust and tweak your life so you can make it work for you and your illness.
(I will go into more detail about how I manage my life in Post 4: How to Work while Living with Chronic Illness.)
For example, I have always been much sicker in the mornings. Before noon, I am usually quite nauseated and misearable. I don’t have the luxury of downing a cup of coffee and pushing through.
So I schedule my work for afternoons and evenings, when I generally feel better.
5. Save Those Spoons
I am not sure who started the spoon theory — counting and saving “spoons” as units of energy/health.
(UPDATE: My friend Zina referred me to the originator of the spoon theory. Read her article here.)
Personally, I have always thought of it as living on a very tight budget — and I regularly have to steal from Peter to pay Paul!
But however you write your analogy, the only way to survive lengthy periods of illness is to have “splurges” you can look forward to and save up for.
I have traveled many times, despite my illness. Before I was married, my parents would take me in my wheelchair — because if I was going to have to be sick, I might as well be sick in a new, beautiful, or fun place.
Even now when I go on trip, I know I will have to deal with the repercussions of it. But I think those days are spoons well spent.
Yes, I do have to say no to most trips I am offered as a blogger. It is hard to look at the feeds of my friends and know that if I were “normal” I could be on those trips too.
But, I acknowledge those losses, deal with the grief and frustration, and then focus on the things that I am able to do.
Invisible Illness — A Documentary Film
As I said, the reason I finally summoned the courage to tell you about my chronic illness is because of the new documentary film, Invisible Illness, that my friends, Tasra and Ron Dawson, produced.
“In the United States alone, nearly one in two people (133 million) has a chronic medical condition. 96% of people with chronic medical conditions show no outward signs of their illness.” — Invisible Illness
Tasra also shared her insight with us in this post How to Explain Your Chronic Illness.
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