I am a 38 year old male who lives in Peterborough, Ontario. My health has been “not quite right” for most of my life. It only took the medical field 37 years though to give me a proper diagnosis. It turns out I have 2 conditions that combine to form one rare syndrome.
This is a story about some of my experiences as I navigated the Canadian Health Care System with what I thought was a simple question.
What the Hell is wrong with me?
My unhealthiness started pretty young I think. At either 10 or 11 I was hospitalized for the first time. My right hip/leg swelled and walking became a problem for a few months. In a conversation repeated many times throughout my life the Drs. had no idea what caused it.
I was a fairly active child playing Soccer and Basketball. My main sport though was swimming, training 3-5 times a week. Once the pain went away in my leg/hip I continued with sports until I was 15 and my leg and hip swelling came back. That time the same things happened. Pain, Swelling, Hospitalization, Leg started getting better, Confused Doctors, release from hospital.
My leg was slower to heal the second time for some reason, and I got my first [of many] canes. I still had every intention of continuing to play sports when I got better.
I stopped dreaming of being an athlete the summer I was 16.
During summer vacation that year I was a passenger in 2 car accidents (At the beginning and end of summer). While neither was deathly serious both left me pretty banged up. The first one left me unable to move my neck and in a collar for almost 2 months.
The second accident I hurt my shoulder and lower back, along with re-injuring my neck. At the time I lived in a small town where the medical facilities were lacking. I don’t remember much about that time, but my parents do/did). They say my recovery, or lack off, made no sense.
Doctors kept telling me I should not be in pain 6 months after the accidents, and pain kept telling me the Dr’s could go suck Flying Free Range Ferret Feces. I had to quit playing sports when I was 16, which should have been a sign something was very wrong with me.
The next year pain started in my hands and feet and I was surprised by my Doctors reaction. He examined me, took x-rays and ran some blood tests. The tests of course showed nothing but my body did not care what the tests said.
I was 17 and on some days could barely get out of bed. When I would mention my pain he would get mad at me. He kept telling me nothing was wrong, and after probably a year of these arguments he began to suggest either I was looking for attention, or looking for pain medication to get high or sell.
Even though I left town to go to Theatre School the following year the pain followed me. Sometime in the first year the pain became what I referred to as full body. Between first and second year I was diagnosed with Fibromyalgia. I was told all my pain was from Fibro and there was nothing that could be done.
It is my understanding that a diagnoses of Fibro should only come after every other possibility has been explored, and nothing is found to be wrong.
Mine came from a few x-rays and a 5 minute physical exam.
Second year of Theatre College my health continued to get worse instead of better. I started getting severe infections in my mouth and gums and 4-6 months later that tooth would fall out. I had 6 teeth come out on their own before doctors decided to take them all out.
Again, doctors had no idea what was wrong with me.
As I’m sure you can imagine that made finishing acting school, or pursuing a career in theatre quite unrealistic. At my last audition, during a fight scene I moved my head violently, trying to make it look like I had just been punched in the face. My new and not properly fitting dentures flew out of my mouth, hit the stage and kept sliding.
I decided instead to pursue my second love, photography.
For almost a decade I lived with the very wrong diagnosis of Fibro. I tried working a few retail jobs but each time had to quit or was fired because my body kept failing me.
In the Dr. Department I had a great young doctor who tried her best to help me, but really did not know what to do with me. All she could do is pump me with pain meds and send me to a few specialists.
A pattern quickly formed with the specialists I was seeing. They mistook “Please take the pain away” or “Make the pain stop” as me asking for pain meds, when that could not be further from the truth. I just wanted whatever was wrong with me fixed and the pain to go away.
In 2003 I moved to Peterborough, and for the first time ever I had a good doctor. My first appointment, Dr. Friessen listened to me and gave me a thorough exam. When he finished he said “You don’t have fibro. I don’t have a damn clue what you have, but it’s not Fibro. I promise you though; we’re going to find out.”
First he had to treat my very high blood pressure, since it was 180 over 132. All those doctors I saw in Ottawa and not one had checked my B.P. that I could remember. The second priority became the pain in my lower back.
In Ottawa I had x-rays of my back done which never showed anything wrong, so my new Dr. sent me for a CAT scan. I think Dr. F was pretty surprised when that came back saying I had 1 large and 2 smaller herniated discs with Degenerative Disc Disease Also I had severe congenital spinal stenosis, which meant I was born screwed up. The more he sent me off to get some test or another, the more he found wrong with me.
My Stupid Mistake
I’m not sure when the boils started; sometime after moving is all I know. I started getting what I first thought were large zits in my armpits. They hurt a bit, but with Dr. F finding so much wrong with me, I did not want to waste his time with these things.
After probably 6 months or so they went away in my armpits, only to reappear on my thighs, butt and groin. The thing I regret is not telling my doc as soon as they started. I was too embarrassed to show him since I figured they could be from not washing enough or maybe I had grown to fat and they were the consequences of my thighs rubbing together?
Either way, I never thought of them as very serious or that they could be connected to my bone/joint problems.
I suffered in silence with the boils for 6 years as they started coming more often, got bigger and started coming in multiples instead of singles. Fear finally broke my silence, fear of a small hole that had developed in my scrotum from a particularly nasty boil. I’m not sure how long it was there before I decided to tell my doctor, but it was too long. For over a month I think, I freaked out about it more every day.
I also was getting deeply depressed.
The loneliness was crushing most days. I had gone from having a group of friends who I saw and went out with almost daily to knowing no one but my Dad in a 200 mile radius. The only people that came into my life were people from medical offices. I did get friendly with one guy who was the step son of one of my Drs.
Turned out he was friendly because I had stuff he wanted, Percocets and OxyContin [it can be very addictive and strong pain medication]. I had a couple of months where I was short of pills and got really angry at my drugstore.
He never took enough at a time for me to visually say I was missing any, until the last time. The last time I saw him he stole three and a half weeks of pain meds and 100 dollars from me. I heard later he had then gone to his real Dad’s place and stole 2 grand from him, then binged on my pain meds for a few days before selling the rest and flying to Mexico.
So with that happening I went to my GP with the hole in my scrotum convinced I’d never make a friend again.
When I did though, Dr. F proved once again that he is an exceptional doctor.
There is a statistic that most people will see 17 doctors over 8 years before hearing the term HS. Dr. Friesen took one look at my scars and open wound and told me I had HIDRADENITIS SUPPURATIVA.
Next thing I knew I had an amazing Dermatologist named Dr. G., and I was just so relieved and glad I had said something. She showed me a whole world of possible treatments, a lot of which I ended up trying. After too many to remember we came upon a regime that by no means cured the HS, but made it bearable for a few years.
The thing I’ve found that helps me the most are the steroid injections. On average it cuts a Lesion’s active time by half. On top of that I use 2 different kinds of creams/ointments when I have a flare up and two [one for HS areas and one for the rest of me] antibacterial soaps when I shower.
I was only in my early 30’s at this point.
By 2010 I had to give up photography because the pain in my neck, shoulder and middle back got so bad I could no longer support the weight of my pro camera. My hands and wrists were problems as well, some days leaving me unable to grip the camera or turn a zoom ring.
I decided instead to devote my time to finishing a young adult book I had started years before called How Boy Bands Ruined My Life. It required me to adopt a one handed/ two fingered typing style, but I was able to slowly do it.
I was still lonely, now not only for friends, but for a partner. My friends were off getting married and starting families. I lived with my dad, could no longer work and had not even kissed a woman since losing my teeth [apparently â€œSingle, Non income earning, 6 foot 4, hairy, toothless, obese, semi disabled, very artistic 30 something who lives with his dadâ€œ Is not the highlight on singles websites you would think it is.!!!]
Does that mean I’m a lesbian?
Fast forward to early 2014 and both boils and body pain were getting worse. I had shut myself off from everyone I knew, I was so depressed. I had myself convinced that since I hated myself, everyone else must as well.
Life started getting better in September when I attended a meeting of HS patients. It was amazing; I had no idea what meeting others with HS would be like. How I felt about both me and the disease changed in a matter of hours.
Meeting others proved to me the boils were not my fault.
I learned a lot that night on many different subjects. Everything from how others see us, to how we see ourselves. There were lots of good wound care tricks and tips as well.
It was also decided, since feelings of anxiety, depression and loneliness [I was not alone in my loneliness] were all aspects of the disease a Canadian support group would be a benefit.
Even though my outlook changed, my boils kept coming. Over thanksgiving weekend I got a boil so large it demanded to be named [and Jeffery was his name]. It was the first time HS had brought me to the Emergency Room.
He survived multiple attempts on his life and just would not die. Finally Dr. G sent me to the surgeon’s to get it cut out.
Along with the surgeon, she offered me a medication called Humira. It got rid of almost all my boils and it gave me an unexpected benefit as well.
It reduced my body pain greatly: for a while.
Four or Five days after my injection I was dancing in Dr. G’s office. It had not been since college that my pain levels were that low. That reaction to Humira, a drug developed for rheumatoid Arthritis, got Dr. G to send me to another rheumatologist.
This was one from England where they are a lot more familiar with HS. He was in Kingston and taught at Queens with Dr. G.
There was a fairly long wait to see him, and in the meantime Jeff’s execution day was coming.
The Humira had shrunk him, but not killed it. After it ruptured on Nov first it kept draining everyday till the operation in mid-February.
My appointment with Dr. Averns [the rheumatologist] was in early April. That arthritis doctor gave me something that I had wanted for 30 years, and HS was the key to the whole mystery.
He told me What the Hell Is Wrong with Me.
Sapho Syndrome with associated Hidradenitis Suppurativa. It’s a very rare form of Arthritis that’s an auto immune/ Auto inflammatory condition. Mine though, presented with HS instead of the sores/blisters on the hands and feet called Pustulosis that is the P in Sapho. The textbook write up goes like this:
“SAPHO syndrome is a chronic disorder that involves the skin, bone, and joints. SAPHO is an acronym for the combination of synovitis, acne, Pustulosis, hyperostosis, and osteitis. Synovitis means inflammation of the joint lining” (synovium).Apr 30, 2014
Instead of calling it Sapho Syndrome with associated Hidradenitis Suppurativa though, I’ve come to call it “Lesbian Poet Arthritis with Big Boil Syndrome.”
Let me explain. From the website Bio.com:
“Sappho was born c. 610 B.C. in Lesbos, Greece. She was temporarily exiled to Sicily c. 600 B.C. During her lifetime she wrote love poems expressing her love for both men and women. Sappho died c. 570 B.C. in Lesbos, Greece. As of the 19th century, the word lesbian was thought to be derived from the name of her town.”
Since her name is pronounced the same way as my disease, I figure Lesbian Poet Arthritis with Big Boil Syndrome is easier to say and remember.
So 2015 has turned out to be a big year for me. I became part of something special, having a small role with many others in creating HS Aware. After waiting for most of my life to figure out What the Hell was wrong with me, just having a name for it has helped my depression a lot.
I finished my book, and am just doing some minor edits now. I am going to start sending it to Literary Agents in the New Year [so if any are reading this and are into very strange fantasy stories for teens please find a way of letting me know].
I’m taking pictures again, this time with a very small camera. I feel so happy when I am able to get out and take some photos or sitting down to do some editing. It does not happen often enough, but I’ll enjoy it when I can.
So that’s it, it’s early Nov 2015 and that brings you up to date with my story. Of course there is so much more I could say, that I want to say, but at over 2600 words, I’m sick of talking about myself for now.
Thank you for taking the time to read this, it was a very unique experience to have written it. I cried harder than I have in a long time talking about being lonely. I still don’t really have friends anywhere close to me, but I’ve learned the computer is a God send for staying in touch with people a long ways away. I have an amazing support system online now, that helps a lot.
There are still days though that actual physical contact from another human being feels so needed, but the slightly uncomfortable feeling of a hug from my 76 year old father does not quite cut it.
So thanks again for reading this, please spread the word about these 2 conditions. While Sapho is so rare you will probably never hear reference to it again, HS, in its early stages is thought to be as common as 1 in 100 people. Almost no one knows about it, and a lot of people are suffering in isolation because of that. Awareness must happen for that to stop.