For international Pain Awareness Month, I decided to share a very personal story today with my former colleagues and workplace contacts over on LinkedIn. Although most of these folks know that I have a rare disease, Complex Regional Pain Syndrome (CRPS), they don’t know exactly why I had to go on medical leave at the end of 2018.
The people I know through work tend to assume that I went on medical leave because of the constant and severe neuropathic pain from this disease, along with the other types of pain caused by CRPS; joint pain, swelling, and more. Despite all this pain, though, I’d been able to push through and continue working – because I truly loved my career.
A very hard-earned career, at that. I’d taken evening courses throughout my late twenties and thirties, to complete a Bachelor’s degree that I’d had to abandon when my parents became ill and lost their jobs during my second semester. I left university so that I could get a full-time job, to pay off the unpaid property taxes on my childhood home.
Otherwise, I’d been told by municipal officials, my parents’ home would be seized – and then sold at auction. I can’t regret that decision to leave school, because my family would have been homeless otherwise, but I’d always wanted to go back and finish that degree someday.
When I finally decided to start taking evening courses, while working full-time, I opted for something related to my job at the time. A Certificate in Human Resources Management, at McGill University here in Montreal. I did really well in these evening courses, so decided to complete my abandoned Bachelor’s degree; still taking night courses, but with a different university where classes better suited my work schedule.
Towards the end of my degree program, that university decided to discontinue some of the courses that I’d need for my degree program; a Bachelor of Philosophy with a specialization in Ethics. To be able to take these courses before they were discontinued, I had to take them all during the same semester; but I couldn’t do that while working full-time.
My brilliant husband convinced me to take a couple of months off work, a sabbatical, and to squeeze six courses into one semester. The company at which I was working at the time had a policy that allowed for educational sabbaticals, so I was able to take that time off without pay.
Once again I really enjoyed the courses, and got good marks for the entire Bachelor’s degree. At that point, I’d been taking night courses for many years, and was happy to have finally completed my undergraduate degree.
After six months of a regular life, of ‘only’ working full-time and not taking evening courses, I realized that I wasn’t yet done. I asked my husband how he’d feel if I were to do another degree – again at night and on weekends. A Masters’ degree, this time, in biomedical ethics; bioethics. He was, as always, very supportive of each step in my dream to eventually get a doctorate, a PhD.
So my new goal, in my thirties, was to finish my Masters’ degree before I turned forty. With his support – for example taking on pretty much all of the household chores, cooking, shopping, and more – I made it.
While I was completing this that degree, my mother was diagnosed with a terminal illness. We also found out that my beloved mother-in-law had terminal lung cancer. I’d wake up super-early each morning to read course materials or work on my thesis project, work all day at a busy multinational company, study at lunchtime, and then spend the evening at either my mother’s or my mom-in-law’s hospital – doing course work on my laptop whenever they’d fall asleep.
Weekends were spent holed up in our basement working on my thesis, hunched over my computer, textbooks, reference documents, and medical journal articles. Surprisingly, once again I did well with my courses; I’d always been on the Dean’s Honour List or completed my degrees and certificates ‘With Distinction’.
I also fell in love with this field, with bioethics! As soon as I’d completed my post-graduate bioethics degree, I re-oriented my career and found a position within a Research Ethics Board; an oversight body for clinical (medical) research studies being conducted in Canada, the United States, and also – for a short time –Mexico. A REB is called an Institutional Review Board (IRB) in the United States.
As I graduated with that second degree, several of my professors asked me whether I planned to continue with my studies, to do a doctoral degree. I told them all that it was my dream to obtain a PhD, but that I needed a break at that point.
After twelve years of night courses, all but one semester while working full-time, I needed to spend more time with my husband. We needed time together to grieve and to heal, because by that point we’d lost both of our mothers to their illnesses.
In mid-2018, after having landed my dream job in early 2016, I began looking into to PhD programs; I was hoping to find one that I could once again complete while continuing to work full-time. I’ve never been afraid of hard work, of long hours, likely because of my early career experience as an Air Force Reserve officer.
I knew that it would be a challenge to complete doctoral-level courses with both a full-time job and a rare disease that causes severe chronic pain. But I was convinced that I could do it, that I could make it work with my husband’s support. So was my husband. Any dream that I’ve ever had, he has backed me 100%.
This time, I’d have been fulfilling not only my own childhood dream, but also my dear grandmother’s; to be the first in our family to attain the title of “Dr. Woods”. As you might have guessed, education was very important to my Scottish-born grandma.
The next step on this new path was going to be a conversation with my boss. Our multi-national healthcare company had a number of policies promoting employee education and advancement, and I hoped to qualify for one of them. A policy that would help an employee pay for a university degree, if it was in line with their career path within the organization.
Before I could have that conversation with my boss, though, I began to notice that I had begun to forgetting things at work. I’d always been a detail-oriented person, but found myself forgetting important details. I’d chair a meeting, and take notes on the decisions that had been made, but then by the time I walked back to my desk I’d have forgotten what my notes meant. It was horrifying, terrifying.
My two degrees were in philosophy, and I found myself unable to think properly; I couldn’t hold a train of thought. To a philosophy major, that’s kind of like not being able to tie your shoes! I suddenly had to start double- and triple-checking everything I did during the workday, because I was making mistakes that I’d never have made in the past.
Even language became a stumbling block, and (as you know if you read this blog!) I love to write. Some of the examples I can recall are when I was chairing a meeting and said “an elephant of” instead of “an element of”, or “charisma” instead of “charity”. I’d use the wrong word whether I was writing or speaking to someone, talking on the phone or making a presentation in a meeting.
It got to the point where I was constantly wondering about what – and when – I was going to say or write something that didn’t make sense, whether I was forgetting something, or making errors in my work. What was going on? Did I have early-onset dementia or Alzheimer Disease? Was something else wrong with brain?
Well, it turns out that the neuro-inflammatory facet of CRPS was making its appearance; CRPS is a rare combination of both an autoimmune disease and a neuro-inflammatory condition. I had developed a ‘mild cognitive impairment’ due to the this horrid rare disease:
By studying an animal model, researchers hope to better understand the neuroinflammatory basis of CRPS in order to identify the relevant inflammatory signaling pathways that lead to the development of post-traumatic CRPS…
Researchers hope to identify specific cellular and molecular changes in sensory neurons following peripheral nerve injury to better understand the processes that underlie neuroplasticity (the brain’s ability to reorganize or form new nerve connections and pathways following injury or death of nerve cells).
Identifying these mechanisms could provide targets for new drug therapies that could improve recovery following regeneration.”(1)
The reason for which I had to go on medical leave wasn’t the daily excruciating pain that I’d experience; it was the ‘mild cognitive impairment’ due to my CRPS. The text below is what I posted to LinkedIn this morning, as a much shorter version of this very personal story, for international Pain Awareness Month:
Here’s a guessing game and a personal story for Pain Awareness Month.
Can you guess the worldwide prevalence of chronic pain?
Globally it’s 10%, but the prevalence runs as high as 25% in some areas.(2)
One out of every 4 people may deal with pain on a daily basis.
Chronic pain conditions can strike your family, friends, coaches, colleagues, team mates – people like me.
I had a career I loved – in bioethics – until it was stolen by a rare disease named Complex Regional Pain Syndrome (CRPS), formerly called Reflex Sympathetic Dystrophy (RSD).
I could manage – just barely sometimes! – to happily do a job I loved, despite the constant neuropathic and joint pain, fatigue, and other symptoms of this autoimmune and neuro-inflammatory condition…
Even though I’d often have to rush to a washroom to vomit, from neuropathic pain flares, at the office.
Then a new symptom crept up on me at the end of 2018; a ‘mild cognitive impairment’, resulting from my CRPS – and suddenly I could no longer do my work.
It turns out that CRPS patients can develop “cognitive impairment in executive function, naming, and memory”.(3)
This pain condition stole my career, my life plans, and my dream of completing a PhD.
Thanks for reading.
This is much more of a personal story than what I normally post to LinkedIn, but I thought sharing it might be a good way to raise awareness of the true impacts of chronic pain conditions like mine. To show that any one of us, or one of our loved ones, could be struck by this type of debilitating illness.
As always, thanks so much for stopping by and feel free to reach out via social media as the comments feature of the blog has been disabled; it’s too much for me to deal with, now that I have cognitive challenges. Stay safe, take good care, and find moments of happiness and joy in each day ‘-)
References:
(1) National Institute of Neurological Disorders and Stroke (NINDS); the National Institutes of Health (NIH). Complex Regional Pain Syndrome Fact Sheet. Website. Updated 13 Mar 2020. Online.
https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/complex-regional-pain-syndrome-fact-sheet
(2) International Association for the Study of Pain (IASP). Pain Awareness Month. Website. Updated 2020. Online:
https://www.iasp-pain.org/pain-awareness-month#:~:text=Help%20IASP%20raise%20public%20awareness,of%20September%20(and%20beyond).
(3) Schwartzman, Robert J. Complex Regional Pain Syndrome: Systemic Complications. Practical Pain Management. Vol 13;3. Updated 27 Oct 2014. Online:
https://www.practicalpainmanagement.com/pain/complex-regional-pain-syndrome-systemic-complications