Written by a 2023 Young Adult Weekend Retreat attendee for the RSDSA blog.
Complex Regional Pain Syndrome affects every part of one’s life. The constant pain you are in restricts you from enjoying life. Aside from the pain you are in, your social life will ultimately be affected. I recently learned that CRPS is generally found in women. 85 percent of cases to be exact. I fall in the less prevalent 15 percent category of men with CRPS.
Men and women can both have CRPS, but our experiences with this condition are not entirely the same. Men are taught from a young age to be the “tough” guy. We are told to be the “man” of the house. Whenever I am on an airplane, I am usually asked if I can lift someone’s luggage into the overhead bin. It is usually a woman that asks me to help them out with their heavy suitcase. In these cases I feel somewhat defeated. Can I lift the bag for them? Sure, I am physically able, but it will definitely hurt. I feel uncomfortable in these situations as I do not feel like explaining myself to a total stranger.
I recently attended RSDSA’s Young Adult Weekend Retreat in Philadelphia. I had a great time, but I was the only male in attendance. I know that men are the minority when it comes to this diagnosis but I do wonder if men do not show up because they may not want to be vulnerable. Men do not always enjoy talking about their feelings and what is going on in their life. We try to be quiet and just attempt to get through it. This is definitely not a healthy practice as we all need to vent and meeting others who suffer just like you do can be beneficial.
As much as I would like to have someone in my life, it is often difficult to put yourself out there in todays dating world. This condition is scary. Any Google Search will show you that CRPS is nicknamed “the suicide disease.” You want people to understand, however, you don’t necessarily want to tell someone you just met about a condition like this one. But at the same time, you want to be able to talk about it. It is also hard to market yourself when you have not been able to hold a job for the past ten years.
In addition, just hanging out with a woman can be difficult. I live right outside NYC. Usually the women I speak to via dating apps such as Hinge, live in NYC so naturally that is where the dates are. Going to the city and exploring requires so much energy, the thought of it gives me anxiety. But I believe chivalry isn’t dead and a woman should be treated properly. I like opening doors, walking women home, and paying for both of us when we spend time together. Since I am disabled, I live on a fixed income and may not always be able to afford to do all the things I would like to do for someone. It often becomes very easy to feel defeated.
One of the positive outcomes of having a diagnosis of CRPS is that you really learn who your true friends are. I am lucky to have a group of friends who have been there for me through it all. However, I have lost some along the way. In addition, it becomes difficult to make new friends at my age especially in my case. I do not have the energy to form new friendships and being disabled doesn’t exactly allow for me to be out and about so often. I would much rather be home watching television in most scenarios. When I do meet someone, they always ask the question, “So what do you do?” I’m a young male adult and although disabled, I don’t look it. Besides some scars from past surgeries, I look completely healthy. Most men my age are in their prime building their resumes and taking care of their family. This is not the case for me.
The minister at my local religious institution came up to me at the last holiday. He wanted to know if I would be interested in attending his “whisky and wisdom” events catered to young male professionals. I have attended a few and I am always very uncomfortable. I am on a great deal of medications and definitely cannot drink whisky. I also do not have so much in common with these young male adults. I have tried to explain my condition but anyone reading this knows how that goes. I have family members who have asked me if my condition could be psychological, let alone strangers who are meeting me for the first time.
There are times where a wheelchair might be needed in social settings. I attended a concert with what I thought was a close friend. I told him about my need for a mobility device. He was apprehensive to the idea and ultimately did not help me out. I was just left to walk with the chair and just sit in random spots when I got tired. I have not spoken to this “close friend” since that night. Obviously this did not make me feel great, but I did learn a lesson. Keep your circle small, but have a few great friends.
Without the ability to work or get out and about, loneliness sets in. Although I do have family and friends to speak to, it’s not the same as having a significant other. I promised myself that I would try to explore the dating scene once again.
I will continue to fight this condition and do my best to raise awareness. I hope that I can one day meet more young male adults. I am forever grateful to the RSDSA for providing resources and hosting their Young Adult Weekend Retreats.