MAID and the black hole of chronic pain
Personal Stories | July 27, 2022 | Ron Weber
Earlier this summer, Ron and his wife Lori generously shared their stories with us — Ron as a person living with chronic pain, the challenges of the health care system, and his decision to pursue medical assistance in dying (MAID); Lori as a caregiver to Ron and the experience of a loved one choosing MAID. Ron accessed MAID on July 11, 2022. We are grateful to both Ron and Lori for their honest accounts of this experience.
PART 1 – Ron’s story
I have been living in a black hole for quite a few years now. This black hole is a place that no one ever wants to visit and, once you end up getting there, getting out again is simply not possible.
It’s not that I was looking to explore or inhabit this particular black hole, but sometimes we have no choice in where we end up living, or how we live.
And after very many years, I have ended up thinking of this place I inhabit now, a place of unending pain, as a black hole.
It’s a place no one else can really see into, but which encompasses your whole being and encases you in a special darkness which separates you from the world and the ones you love.
Chronic pain does that, over time, slowly trapping you in your own body and diminishing your basic existence until little is left but the pain and managing the pain, as best you can.
I’ve been living with chronic pain for almost half a century, which is way too long. And so it has come to the point now where the pain must end, and so it will, soon.
In terms of my medical history, I have been living with ankylosing spondylitis (AS), a form of inflammatory degenerative spinal arthritis, for over 40 years. This disease has caused me chronic pain since the mid to late 1970s, and severe chronic pain for more than the last 20 years.
AS is also part of the family of autoimmune diseases which includes rheumatoid arthritis and lupus, as well as juvenile arthritis and psoriatic arthritis. As such, it is a highly variable disease and can manifest somewhat differently depending on the person and situation. Unfortunately, from what I’ve been able to determine, modern medical practice still does not understand all that much about spondyloarthritis conditions and autoimmune disease overall.
In fact, I never had ‘typical’ AS since my spinal vertebrae have never fused. Many of my vertebrae are degenerating and causing me severe pain, but much of my general body pain comes from my muscles and connective tissue, and not my joints.
This may be partly why I had such a difficult time with diagnosis, since unlike most arthritic people, I’ve always been able to move my joints, and even my degenerating spine, fairly well. This has taken exercise, constant stretching, and massage therapy, up until the point where I couldn’t do that anymore.
By looking at me, I suspect few people have known or suspected that I was dealing with degenerative arthritis most of my adult life.
That is until the last decade or so.
Back to the beginning: In 1977, I was hospitalized for a week in order for doctors to try to determine what was causing my severe chronic back pain. After a week of testing, my doctor, an orthopedic surgeon, in consultation with a rheumatologist, diagnosed ankylosing spondylitis.
I had never heard of AS, no one I knew had ever had that disease, or even had heard of it, and there was no treatment. The diagnosis was that my spine would slowly degenerate and fuse over the next 20 years or so, if the disease followed its expected course.
My AS did not follow the expected course, however. After about 10 years of wearing a back brace to prevent spinal curvature, the doctor determined that I likely did not have AS given the lack of fusion of spinal vertebrae. Unfortunately, the doctor was wrong about that and we now know that AS can manifest in very different ways in different people.
Around about the same time, my disease went into partial remission and my pain levels decreased for the most part. For the next 10 to 15 years I still was dealing with some low to moderate level back pain, but not as severe as during that first decade.
Around the turn of the millennium, in 2000 or so, I noticed that my back pain had been increasing in severity and persistence, and so was able to get to see a general practitioner.
The orthopedic doctor, the last time I had seen him some dozen years earlier, had said that there was definitely something weird about my spine. He also said that as long as I was able to function without significant impacts on my life, I should just go ahead and live my life without worrying much about the pain.
However, he did say that if the pain increased again, I should see about getting a referral to a rheumatologist.
So, I went to the new GP with my tale of long-term chronic pain and prior diagnosis of AS, expecting I would leave with a referral to a spondyloarthritis specialist.
But, instead of sending me to a rheumatologist, the doctor sent me for x-rays, and when he did not see anything that he thought was significant in the x-rays, he determined that, despite my severe constant pain, he was certain I did not have a severe degenerative spinal disease.
What my GP did not seem to know was that x-rays are not very good at showing degenerative sacroiliac joints and other vertebrae in detail, and that you can have severe pain and spondyloarthritis degeneration without much radiological evidence at all.
So, unfortunately, the doctor turned out to be wrong, but since I was at that point still managing the severe pain fairly well, most people just looking at me would not think that I was having difficulty with bad pain.
What you expect doctors to understand is that if you’re dealing with severe pain over long periods of time, you learn to cope. I never wanted people to see me as someone who was ill or diseased, and no one likes to hear other people’s complaints about their aches and pains non-stop either. So the doctors who were supposed to help me, and most people around me except my closest family, did not know that I was dealing with severe chronic pain at all.
I did become certain again after a while that I was indeed suffering from a significant illness, and every year or two I would go to my GP and repeat that I had very bad back pain and my symptoms were very much those of AS.
But because I was always able to maintain physical capacity and activity, at least until about 10 years ago, my doctor just never believed that I was dealing with AS.
Doctors, as fallible human beings, can make mistakes. What gets really annoying is when the doctor does not recognize he has made a mistake and continues making the same mistake year after year. Perhaps medical training needs to include more reminders that everyone makes mistakes, but making the same mistake over and over again takes a particular level of arrogance.
And when your mistakes cause others significant levels of pain and loss of the fundamental enjoyment and capacities of life, those are big mistakes.
Eventually, around 2015, I finally convinced my GP to give me a referral to a rheumatologist, who took about 15 minutes to diagnose AS. And even at that point my GP did not believe I had AS until he saw a genetic marker test which confirmed the rheumatologist’s diagnosis.
The degeneration has also became much worse over the last 20 years, and adding to the severe chronic pain are comorbidities that have become much worse as well, such as widespread fibromyalgia and muscle atrophy, severe IBS, which makes leaving my home impossible most days, and inverse psoriasis of the genitals.
Aside from managing daily severe chronic pain, my ability to walk, eat, sleep, defecate and urinate have all become affected and are frequently very difficult. I have no real quality of life to speak of, and basic life functions are barely manageable.
Since the rheumatologist confirmed AS in 2015, I have also been followed by a pain specialist, dermatologist, and cannabis specialist, but, aside from cannabis, no doctor has provided any meaningful pain improvement. And I have attempted many medications and therapies, including several dozen types of NSAIDs and other drugs, and three biologic medications.
Unfortunately, no medication or therapy has made a significant difference to my inflammation and pain levels, and many meds have frequently made symptoms worse or caused other issues. Aside from massage therapy, I have tried chiropractic and acupuncture treatment and photobiomodulation therapy, but no other alternative treatments have proven helpful.
Read ‘Getting MAID ain’t easy’, Part 2 of Ron’s story