It’s kinda strange being a man with RA. On the one hand…being a tiny fraction of an already small demographic is special in its own way; membership in a very small and unfortunate club that we winced our way into. We are a rare and isolated group; a sub-species that wandered onto a twig of the evolutionary tree that could not bear our weight, crashing to the earth in a lopsided fight for and against our own bodies.
On the other hand, we are doubly invisible. Commercials seem to be aimed almost exclusively at women, generic literature on RA is sprinkled with feminine pronouns and rheumatologists’ waiting rooms scattered with ladies magazines. Chat rooms and support groups are predominantly women over 35, welcoming and open to be sure, but difficult for me to fit into and find belonging in a way that I need. (No offence to you lovely ladies who have been nothing but kind to me. The fault is all mine).
As a man with a secure sense of masculinity, I can shrug off the imagined stigma of having a “women’s disease”, but there is no denying that my gender plays, and has played, a large role in how my disease plays out.
From the very first symptoms, my being a man steered my doctor away from an RA diagnosis, my demographic and symptoms simply did not fit the disease profile. It didn’t help that I was RF-factor negative, but it took a 9-year journey from there to my diagnosis that may well have been avoided were I a more likely candidate for the disease.
In the beginning it was difficult for me to distinguish construction-work injuries from flare-ups, as they often overlapped, and this only added to the confusion. In true masculine fashion I chose to muscle my way through this strange revolt inside of me, finding workarounds for uncooperative body parts and bullying myself into showing up for work when I clearly had no business on a construction site. Denial came easily, even with the diagnosis. Because my disease presented atypically and I am a man I shouldn’t really have this, should I..? It’ll just disappear the same way it came, won’t it.
It took 16 years for me to finally admit that I could no longer build, that I was really sick and needed serious medication to cope. SIXTEEN YEARS!! I have to attribute at least a few years of that to bullheaded XY genetics..
There is no way to tell how my RA journey would differ if I were a woman, but I imagine that some of my issues might be around other things. My manhood is defined (to myself) by my capacities; my ability to respond to another’s needs, my resourcefulness, my strength – both physical and mental/emotional, and my integrity. All of these were severely compromised in my long fight with RA, shaking my confidence and distorting my self-image. No longer was I strong, reliable, dependable or responsible. I had set a pretty high bar for myself in my life and it was all I could do to crawl under it. As far as I was concerned, my masculinity had eroded, and that was good feasting for the depression that stalks this disease.
In that space I learned many things that I otherwise may never have: how to be tender with myself, how to be patient with the process, how to be more tolerant and understanding of other people in their struggles and that my manhood does not arise from where I thought it did. I get to slow down see that we are all suffering in our unique ways and that compassion is the only answer.
It is surprising to have seen no research that explores whether there is a different disease pathway in men versus women despite anecdotal evidence indicating that pregnancy, menstruation and menopause (or the related hormones) all can influence the disease. Clearly there is some gender disparity in this disease, as indicated by the numbers, and I would love to know why that is and whether that opens up avenues for treatment options.
Because if there is an appreciable difference between men and women where RA is concerned, let’s exploit it for all the good we can.
Of the estimated 1.3 million people with rheumatoid arthritis in the U.S., women outnumber men by as much as three to one. ~ Source: WebMD