Rheumatoid Arthritis (RA) is a chronic, progressive, and often debilitating inflammatory disease that causes pain, stiffness, swelling, and loss of function in the joints. It can affect people of any age but often begins between the ages of 30 to 50. About 300,000 Canadians live with RA.
More women are impacted by rheumatoid arthritis than men but men get RA, at any age. This #TalkOverRA campaign I speak with several Canadian men living with rheumatoid arthritis and the stigmas around arthritis and chronic pain in men.
It can take a lot for some men to reach out for help, in fact men are less likely to reach out for help when it comes to living with chronic pain or illness which can lead to poorer outcomes. To some men speaking about their chronic pain is a sign of weakness, as men often feel they need to appear masculine and strong – superman syndrome. Unfortunately this stigma can have a heavy influence on their physical and mental health, rheumatoid arthritis is best treated when caught early.
Stereotypes make men feel as if they should be able to take care of a household, lift heavy objects, perform sexually and be masculine at all times. This traditional, stereotypical ‘role’ of a man needing to be masculine can get in the way of men feeling that they can’t reach out for help when they are struggling. Chronic illness doesn’t care what sex you are though and having chronic illness isn’t a sign of weakness but part of being human.
Along with feeling as though they must appear masculine before reaching out for help from a medical doctor, they often believe their health concerns don’t need a doctor and will go away on its own.
With rheumatoid arthritis this can delay diagnosis and early effective treatment, not just the care of a rheumatologist but a physiotherapist, occupational therapist and psychiatrist.
Sadiq Jiwa, professional golfer was diagnosed with Juvenile Idiopathic Arthritis at the age of 6. Sadiq is a member of the Arthritis Research Canada patient advisory board. “The symptoms began when I was 3.5-4 years old and they began in my upper neck. They included severe muscle tightness, sharp pain in the joints, and major headaches. As I’ve grown the condition has become systemic affecting almost every joint in my lower body, my shoulders, Jaw, Neck, Wrists, and others. Systemic tightness, chronic pain in specific recurring areas along with acute and intermittent pain in other random areas, muscle weakness, inflammation, and swelling are all just a few systems I go through on a daily basis.”
Kris Harrison was also diagnosed quite young and is an Ambassador for The Arthritis Society “ I was diagnosed at 4-5 years old. I fractured my ankle by jumping off of something. My parents noticed it really swollen and took me to the Dr and they put my foot in a cast. A few weeks after getting the cast I complained my other foot was hurting me. Parents took me back to the Dr and after doing tests I was diagnosed with Juvenile RA. It slowly spread from my feet to every joint in my body. I am affected from head to toe with RA. I had both hip and knee joints fully replaced when I was 25. I had my first knee replacement at 18 years old.”
Scott Wearmouth 46 years old, owner of an electrical wholesale business for 26 years, married with two children “ I was formally diagnosed in the winter of 2018 when I was 43 years old. In hindsight, I had been experiencing symptoms for about 1 year prior to my diagnoses, although they had not progressed to the point of concerning me until the fall of 2017. Swelling and pain in my fingers, wrists and feet were the first points of pain. By the time I was diagnosed it had progressed to severe pain in virtually every joint in my body except my neck.
Thankfully, at the time I was training and competing at a high level in CrossFit. Because of this I was in consistent contact with a chiropractor, regular physio and various coaches. Something such as an autoimmune disease was just not on my radar. At the start of my symptoms I just assumed it was small injuries and just kept training through them, eventually the pain was so bad my wife would help me get out of bed in the morning. My chiropractor and physio were the ones who eventually said “something is wrong” and convinced me to ask for specific blood work. For months my GP did nothing, with no history of RA in my family and because of my age and the fact that I am male, she would not pursue the possibility of RA. Once I knew what blood work to specifically ask for, I walked into an ’emergency’ in the hospital and demanded to receive the blood work. The results were sent to my GP and 2 days later, she called me. The next couple days were a blur. I got in to see my GP, she gave me the diagnoses, then I was immediately sent to rheumatologist for more blood work, x-rays and started my medication.”
Michael Kuluva, fashion designer/ founder of Tumbler and Tipsy and retired professional ice skater
“I was at school walking from a class to another class when I felt this sharp pain that put down to the sidewalk. I thought possibly it was a kidney stone however my Urologist couldn’t find anything, so he recommended I go see a Rheumatologist.
I originally was diagnosed with Psoriatic Arthritis at first, I am not sure why as I did not have any Psoriasis, however after finding another specialist for a second opinion, we finally got the answers that I had Rheumatoid Arthritis. I also went to the Mayo clinic for a third opinion on top of a way to learn how to live with this new disease.”
Kyle Richardson is a 48 year old musician/studio engineer, pool service worker, father and husband “ I had been working outside in the parks lawn maintenance and road crew one summer at the age of 23. my ankle swelled up and it didn’t go away for several days. After seeing my family doctor and many tests and blood work later I was sent to a rheumatologist that concluded I had arthritis.”
Sadiq is a professional golfer but doesn’t let his RA stop him. “My JIA was the main reason I picked up golf. I was a competitive hockey player and had to stop playing due to the physicality of the sport and the nature of my condition. As my condition got worse it has adversely affected my golf. I missed an entire year of golf in college due to having a major flare and recovering from that for a few months. On a day-day basis, I work with a physiotherapy group that oversees my rehab and warm-up routine and strength and conditioning. I have to go through my rehab exercises in the morning each day before swinging to make sure I’m able to perform optimally. The limited flexibility and pain at a micro level has made me swing a little differently compared to the standard approach and I have to work with the limitations of the JIA. On a macro level, the way I train, the markers and measures I look at are different from others going after a similar goal and I know that I have to work a little harder than most people just to get to the same goal.
Michael “I have my schedule pretty spaced out so I do not stress myself out as I find that a trigger for my arthritis flare ups. It has taken many years to get to this point of slowing down for my daily schedule. Most of my friends and family are very understanding when it comes to my schedule and my daily life.”
Sadiq “In addition to pursuing a professional golf career, I currently work as the National Marketing and Communications Manager for the Maple Leaf Junior Golf Tour. I’m thankful that my position is remote and I have flexibility in my hours of work. However, some of my responsibilities include manual labor work in the form of running junior golf tournaments. This type of work includes heavy lifting of boxes, setting up tents & banners, and being on my feet for 12 hours straight. I have to make sure I keep stretching and mobilizing throughout the day. My coworkers are quite understanding if they know I need to switch out or sit down for a bit; we have a great team. Those tournament days I need to go through the extra mile of prepping (i.e. getting adequate sleep, taking my anti-inflammatory in the evening and morning before, doing some hydrotherapy or getting into an ice bath). “
Scott “ Fatigue and on the rare occasion stress induced flare ups have had the biggest impact on my work. I own an independent electrical wholesale company. Most of my days are spent doing management type paperwork, work sight visits and sales calls. Aside from trying to keep my stress levels low (which are a big flare up trigger for me) I have not needed to make any significant changes to my workspace to accommodate any physical limitations.“
Sadiq “It definitely does. Lots of people don’t understand the toll a systemic condition has on a person both physically and mentally. I’ve had some unfortunate experiences where girls have chosen not to go out with me or continue going out with me due to the limitations of my arthritis. That has made me reluctant to share and let people in. I have gotten better more recently about being open and vocal about my condition and standing up for it when questioned. “
Kris “Having RA does make dating difficult. When you have a very visual physical disability that has caused you to look a little different it doesn’t make you attractive. When you are physically smaller than most women it’s hard to make them feel safe and secure like most women I think want. When you get turned down for dates or know women just aren’t attracted to you it affects the self esteem, the self confidence. It makes it really hard when most women like a man with self esteem and self confidence. A never ending circle.”
Sadiq “I have a medication regimen currently which includes a biologic and an anti-inflammatory along with pain killers, a muscle relaxant, and a narcotic to be taken as needed. I have a physiotherapy/active rehab regiment which I do 6-7 times a week in the mornings to keep my body loose and mobile before starting to swing. I work with a sports psychologist, a physiotherapist, rheumatologist, naturopath and my coaching team on lifestyle choices, diet and nutritional choices to help keep me performing at my optimal level and reducing pain. “
Michael ” I am on daily medication for my Rheumatoid Arthritis right now. I do
get occasional steroid injections during flare up times of year that I
know my body and mind will be more stressed. I have it managed pretty
well right now.”
Sadiq “I use my arthritis very much as a motivator for me to become a better player and an overall better individual. My arthritis has knocked me down many times on specific major occasions in my career in addition to dealing with the mental side of chronic pain is difficult. But, I love what I do, I have a great team of people working with me, helping me out, and wanting to see me succeed. I’ve accepted the fact that there are a lot of activities that I can’t do because of my arthritis and I have to work harder than most people, but that passion for the game and drive to become the best keeps me going forward. I’ve gotten better at talking with my closest friends who are incredibly supportive and knowing that if something happens, I have a team of people I can go to who will fix me up and teach me how to hopefully prevent something similar from ever happening again.
I think it’s important to have activities that ground you and keep you level. I think that one of the words that comes to mind when asking about my arthritis is frustration and learning to cope with that has been a difficult journey. For me it’s about connecting with people. I love chatting with friends or playing games or watching sports and taking a little bit of time to do that while taking care of the painful area physically helps bring me back to where I need to be to move forward.”
Kris “I’m not sure if my mental health has been too impacted by the Arthritis. Getting it so young I really don’t know life without it. I have grown up with it and have had to adapt my whole life over time. Growing up with something in some ways makes coping with it easier than if I woke up one day having Arthritis. I do understand how living a normal life and then one day waking up and barely being able to move and being in constant pain could have a real impact on someone’s mental health. I really think learning to accept that you have Arthritis or any kind of autoimmune disease helps a lot with mental health. You have to learn to live with it. I’m not saying you have to like it but ignoring it will only make it worse.”
Sadiq “I think that I’ve been in situations where people are afraid of “damaging their egos” or “asking for help.” I knew from a pretty young age and when I transitioned into a proactive approach to taking care of my condition that I had to not avoid either of those phrases. I know that for me it’s not about trying to “one-up” someone else or not show any weakness. I believe that the best of people, the best of characters are formed from dealing with adversity and that’s why I like getting involved on the volunteering side of Arthritis Research; the people make it amazing. I’m not afraid to show my pain or ask for help and the connections I’ve made with people through that have been strong. That also being said, the other side of that statement does occur where people may think less of you or look down on you, but at the end of the day, it’s about getting through my battle and going after what I love to do and nothing is going to stop me from doing that. “
Scott “I have not found it difficult to talk about my RA. I have made an effort to be extremely open about it, hoping to make it easier for others going through similar health issues to be able to open up to me”
Kris “I don’t find it difficult to talk about my health struggles. I also have no problem asking for help if I need it. I think some of that comes from being so young and most kids don’t know not to ask for help with things. I think most men have to get over the “Macho Man”, I don’t need any help from anyone, I’m a man mentality. Every man/woman and child needs help at some point.”
Kyle “My Arthritis started at the age of 23 and before then I didn’t really have any health issues except for a couple broken arms and sprained ankles from doing dumb guy stuff. Dudes are usually the ones doing a lot of physical work like moving the heavy couch or fixing the flat tire on the car which I honestly used to like to do! I really miss doing “guy stuff” like working on cars or building a deck with my friends.I find it embarrassing and very frustrating to ask for help. I try to avoid it. I miss having the physical ability to accomplish those tasks. Trying to discuss my health struggles is a downer in conversations and I try to avoid it nowadays. I have found that trying to discuss my arthritis is useless because people can’t understand the fact that it doesn’t get better. It’s always the same comments “you’re too young” or “I heard about this new treatment (fill in the blank) have you tried it?” I know people are trying to be helpful or connect but it’s just like hearing a broken record.”
Sadiq “Clear communication and the educational approach is what I take to talking to those who don’t necessarily believe in the type of pain that I’m in and how it differs. I ask for those people to not judge the type of pain I’m in because they don’t know and if they’d like to they can come talk to me privately. Once that doesn’t work then I know that those people may not be the best fit for my journey and I say thank you and move right along.”
Kyle “The last time I heard “Man up” was at the age of 23 and it was more like “hey teaspoon hurry up!” As I was trying to fill a hole with asphalt while working on the road crew at work but my wrists couldn’t take it anymore. I just responded “sorry guys my body can’t do it anymore” None of the guys could understand. After that I moved to a light duty job indoors.”
Sadiq “JIA is something that affects everyone including young males. I am someone with a unique condition who goes through a battle each day, week, month, and year. I want people to know that going through those battles and coming out on top of your adversity will make you stronger and that it’s ok to ask for help and not know what to do. Don’t be afraid to seek resources, advice, and help from those that are able and willing. My arthritis does not make me less of anything. Rather it gives me a unique perspective to fight harder for what I want and better help those whom I’m able too. “
Kris “Every young person has struggles whether you have a disability or not. When you throw a disability into life it makes things that much harder. As a young male with RA it’s very hard to watch your buddies play sports as you sit on the sidelines and watch. You want nothing more than to be a typical Canadian male and put on a pair of skates and go play hockey. Instead you have to watch from the stands wondering what it would feel like just to be able to play for even 5 minutes. When you’re a young male you want to do those adventurous and crazy things or you want to be able to work and raise a family and a house. Then you throw RA into the mix and it drastically can change your direction in life. Life isn’t over because you have RA it’s just going to be different then what you may have envisioned for a young male.”
Sadiq “ At the end of the day, it’s about you and your condition, how you manage it, how you choose to approach it, and how you communicate to others. You are really going to be the only person who knows what’s going on or how your feeling and it’s important you stand up for that so that you can access/receive appropriate care/treatments, so you can better manage your condition and let others know how they can help, and so you can inspire the next person behind you who doesn’t know what to do and is going through something similar”
Kyle “So I can get more support for my family and to bring awareness to others that suffer in silence with similar chronic illness. Hopefully there will be more support in the future. Listen to your body and don’t keep pushing yourself past your limits, denial will only make your RA worse. “
Michael ” I need to advocate for myself as no one else will. I have to be my own advocate inside the doctors office and outside. I like to help others as much as I can and try to advocate for others who do not have a voice.”