Mark: 'I'm much happier, truthful and accepting of myself'
For many men, becoming disabled is the worst thing they can imagine. Mark was 25 when he got arthritis, a disabling disease that is wrongly though to mainly affect older women. Now he thinks it may have been the best thing that ever happened him.
I was just about to start my first teaching job. I went for a run and did about five miles. The next day my knee swelled up. Both the doctor and I thought I'd pulled something. He put it in plaster. When the plaster came off it hadn't gone down at all. A little warning bell rang but I just brushed it under carpet. I started pushing even harder to get fit.
Because I was a young, male and on the blood tests my rheumatoid factor was negative, it took a while before arthritis was diagnosed. When it was I went into denial. I carried on as before.
I think my attitude was typically male. I wanted to prove to myself and others that it wouldn't stop me. I wanted to prove that I was still a virile male, still attractive. I was joining in sports at school and I bought a motorbike
Even as the disease moved from one knee to the other and down to my ankles I was still ignoring it. I could still work on my upper body and I deliberately didn't look at my lower body in the mirror.
I'd always been a person of extremes - nothing balanced - all or nothing - sober or slaughtered. I justified what I was doing in my head, reading books on calming down and relaxing but without realising I had to actually do something to become calmer.
But as the arthritis spread so did questions about my self image.
I wasn't succeeding within my own paramenters of job, love life and social life. My body was starting to break down. I got very tired then something flipped. I lost all self esteem and confidence and went into a downward spiral.
Friends would invite me to a party but I was convinced that nobody liked me and everybody was looking. I'd go and make sure I had a really miserable time - sitting there looking negative, closed body language. If someone came over to talk to me, I wouldn't even ask them to sit down. It was a self fullfilling prophesy.
I didn't believe my girlfriend loved me. I just went further inside myself. I pushed her away. I couldn't cope with the fact she might like me because I didn't like myself. I believed she would leave evetually so I protected myself by getting rid of her first.
Like most men, I was physically identified - interested in what I looked like and what my girlfriends looked like - so when my physical appearance went I was in trouble.
The arthritis wan't out of control and not really visible with clothes on. I started a new relationship with someone else very vulnerable. We went through the same process as before except that this time she finished it. She said: 'I can't live with three people - you, me and your arthritis'. And she was right.
She wasn't bothered about my arthritis, I was. I'd put it out there as something separate from me. I think a physical disease brings to the surface disease elsewhere. For me it brought all sorts of stuff out.
My family didn't show affection. My dad was a workaholic and showed he cared in that way. I became the same. I was restrained from developing my own personality - my parents chose my clothes until I was 17 so when I left home for the first time, it was a complete release. I went crazy. I gave the impression of someone who was really open and honest and I could hook people like this. Once I'd hooked them I'd switch off and go back inside myself.
The arthritis brought all this to surface. I'm 37 and it's only now that I can truly say I'm beginning to accept myself.
I think it's helped me confront socially defined ideas of masculinty. I used to kid myself that I looked like anyone else in the street. I couldn't accept I looked as I did. Even now when I see my body in the mirror, I have a struggle. But I believe I'm more than my physical self. I have a deeper understanding of who I am. Disability has enabled me to discover myself and my purpose and path, through it I've found a degree of happiness which I don't know if I'd have found otherwise.
I can't fill a lot of traditional male roles but these aren't issues to me anymore. I used to see a worst case scenario and then not do whatever it was. Now I'll say something to ensure my needs are met. I have no problem with men who want to be more open and honest about their feelings. Those who aren't, I don't want to be with anyway. I'm much happier and truthful and accepting of myself. I don't judge myself or others and I enjoy the moment much more. That's given rise to new interests.
To me, masculinity is about energy and spirit and what you are as a person. It's not about gender or image.
When you have a disability, you need to stand in the gap between your new self and your old self. It's painful and you don't know what the fuck's going to happen but you've got to be there. You've got to go through a mourning for the old you, accept that process of death. It helps if you can find someone who has been down the road. Don't be alone. The exact opposite of what I did. Take responsibility and grow up spiritually. You can be a happy man and a disabled person.
Disabaility has been a positive enhancement to my life. It is me. My arthritis is part of who I am. I am more than it but it is part of me. It's not separate from me or something that's been put onto me.
- For more on arthritis contact Arthritis Care.
- A longer version of this interview first appeared in All Right, Mate by Jim Pollard
Page created on August 16th, 2005
Page updated on January 16th, 2010