Written anonymously for the RSDSA blog.
CRPS is a rare neurological condition that can be very hard to treat. Getting a diagnosis can be very difficult as doctors do not know where it comes from. Each case of CRPS is completely different and studies show that cases are 85% female. CRPS is not something you are born with; it usually develops after some sort of physical trauma. I am a young male adult with CRPS. I try to live my life to the fullest, each day is another fight and I will continue to do everything in my power to find joy in life.
One of the toughest things about CRPS is maintaining relationships. CRPS is so rare and poorly understood. It’s hard enough to find doctors who understand what you go through. Maintaining relationships with family and friends can be extremely difficult. Most people do not understand what we go through which makes it difficult to hold relationships and develop new ones. The dai;y pain is ranked a 42/50 on the McGill pain scale, which is higher than the pain of childbirth, cancer, and other temporary or chronic pain.
Friends and family are extremely important in life. They can provide support and companionship. Unfortunately, these relationships become very strained which causes loneliness and depression.
Dating is one of those things in life that is very difficult. Most of us want the companionship of another person who can come into our lives to add support and serve as a best friend who understands what you go through. Even those who do not suffer from CRPS have trouble dating.
Dating while suffering from CRPS is extremely difficult. I have been suffering with CRPS since I was 15 years old. I did not receive a diagnosis until I was 23. I went to college and had a long-term relationship from the age of 18-25. The woman I was with really did not have to worry about the pain I was going through as it was something I was able to manage.
I knew what I had to do to get through each day and I was able to live a pretty normal life. I received a four-year degree in restaurant management and went on to manage restaurants after college. I dealt with the pain and did not share my struggle with anyone. When I was 23, my pain became unmanageable. I had to stop working and I received many surgeries in hopes of taking my pain away for good. It added a lot of strain to the relationship I was in and after eight years my girlfriend left me. Still to this day she claims that the pain I was going through had nothing to do with the reason we broke up. The pain affected every part of my life, especially the relationship I was in. I was barely able to manage my day-to-day, let alone my relationship. For a few years, I focused on myself and did what I had to do to get myself back to some sort of life.
What I went through was extremely traumatic. Surgeries, treatments, and therapy filled my days and I was not able to go out and enjoy life. After a few years I started to get very lonely and decided I would start dating again, something I had not done very much of.
Dating without CRPS is extremely difficult in today’s climate. Most people meet their significant other on dating apps. At the time, I was 25 years old and had no idea what I was doing. I went on all the different dating apps and tried to find a significant other that I could share life with. Without any preparation or guidance, I built my online dating app profiles and started communicating with women since I was unable to work and I did not have any places I could go to meet women.
I assembled my photos and built my profiles, but I had no idea what to do or say. One of the first things these apps ask you is what your job title is. You also have to fill in sections where you share your interests, passions, and hobbies. Unfortunately, I did not have a job title as I was/am unable to work. I also could not go skiing, play tennis, or play golf, activities that I enjoyed doing pre-diagnosis. The pain that I was going through was too painful to engage in these activities. How was I supposed to fill in these sections of my profile? What were women going to think when they saw no job title or hobbies? Who wants to date a guy that doesn’t work and can barely take care of himself let alone be with someone else?
I am one of the rare cases of CRPS where I do not suffer financial hardship even though I am unable to hold a job. I am lucky that I have financial support from my family. This does not take away from the fact that I do not make my own money from a job. I knew it was going to be an issue as women want someone who has passions and interests and holds a job that can provide financial independence. I did not think it mattered that I couldn’t hold a job being that I am in an amazing place financially. I can do as I please in terms of going out to dinners, traveling, and purchasing things for myself and others. I can go out to fancy dinners, do luxury travel, and purchase things I want for my life. As I started dating, I started seeing how young women perceived me.
Unfortunately, at the age of 26 I was not able to go out and build my career. Aside from that, I had to deal with all the other issues that come with a CRPS diagnosis. Each woman I have dated has had their own issues with what I go through. I did not hide the condition from anyone as I did not think it would be fair. However, I also did not share all the struggles that I went through as I did not want to scare anyone away. What do you share? How much do you tell them? How do you get them to understand what you go through? These were all things that I struggled with as I got further into the dating world.
Just getting to the first date from dating apps can be very difficult, let alone when you are dating with CRPS. Most of the women I spoke to would disappear after I told them pre-first date about the diagnosis. The women that I was able to meet in person did not understand my struggles and really did not want to get involved. One of the first women I dated was very kind and also suffered from a condition of her own. After a few dates she became very focused on the fact that I did not have a full-time job. She had financial issues in her family and was very worried that I would not be able to provide for her in the event that we got serious. She stopped seeing me after about five or six dates, solely because I did not make my own money from a job that I went to. I took her on nice dates and even brought her to a Taylor Swift concert. But this was not enough and she decided not to continue seeing me. On to the next one.
The next woman that I dated shared similar issues that I did in terms of family. I have a brother who had a traumatic brain injury and she had a brother who suffered from a neurological condition of his own. I thought this would bring us together as we both dealt with similar things. I still remember sending her a picture of myself and did not notice that my medication was in the background. She saw how much medication I take and was immediately taken back. After a few dates, she decided she did not want to continue seeing me as a result of this. On to the next one.
The next woman I met was extremely kind and caring. She knew what I went through to some extent. One day, I sent her a picture of myself with four heating pads on after going out with my friend for the day. She really did not know how bad the CRPS was, but when she saw how I was struggling so much just from one outing, she was also taken aback. She loves hiking, going to amusement parks, and being active. These were all things that I was unable to do. She decided that the relationship was not worth pursuing as she knew she would not be able to share her hobbies and interests with me. On to the next one.
I felt so defeated after each failed relationship and continuing on was becoming very difficult. I took a break for some time and when I came back to it I still had the same issues. A lot of the women would listen to me when I told them about the condition but they truly did not know what it entailed. Some of the women would see me on my good days, not the bad ones. I showed them my best self and sort of hid the struggles I went through as I didn’t want them to see the terrible struggle I was going through. I thought it was my battle and sharing the extremely tough things I went through was difficult. I felt embarrassed telling them that most of my days are spent resting and doing therapies or surgeries. They would ask me what I did all day and I really did not have a good answer. It’s not that I don’t want to work or do all the things I loved to do, its that I can’t.
I deal with so many side effects from the medication and pain that just managing each day is tough. People cannot understand something unless they go through it for themselves. Nobody could feel my pain and I didn’t want them to. At the same time, if I’m dating someone they are going to have to see me on my bad days.
One of the women I dated thought I was in remission as she saw me for the few good hours I had in a day. Once she saw how bad the condition was she was quick to depart. On to the next one.
There was a woman from college that I was very into at the time. We shared many similar hardships and although we never dated, we had a wonderful friendship. I tried reconnecting with her and even visited her at her home for a weekend. Unfortunately, there are many side effects to the medications I take to get through my day. Sexual side effects can be a problem for a lot of men but they are even harder for someone on so much medication. I could not be a normal young adult male in that department and that was a big issue for her. She also did not like that I was unable to make my own living. She never really told me why she didn’t want to continue seeing me, but things got very awkward after our first sexual encounter. After our first night together, she slowly started pulling away. Although she never told me why she didn’t want to continue seeing me I could tell. On to the next one.
Seeing women from my college years was a way for me to reconnect and maybe have a relationship that I couldn’t have during that time as I had a serious girlfriend. The next woman I reconnected with was a good friend from those years. We had a few great dates together and I took her to upscale spas and restaurants. But once I told her I was unable to get to her house in another state, she became very upset. She did not think I was putting in enough effort. She saw that I was able to do things such as travel to another country with my family, but I was unable to visit her at her home. I tried to explain, but she did not understand. She slowly pulled away. After a year of not speaking, I reached out to her to see how she was doing. She apologized to me as she was dealing with some physical pain from a recent ski accident. She said she really had no idea what I went through and now she had some understanding as she was dealing with her own pain. However, the relationship was already past due and I was not going to see someone who had treated me that way. On to the next one.
My last relationship was with a woman I also met online. We went on a few dates and things were starting to get semiserious. I was trying my best to be the guy I thought she wanted, even through all my struggles. I took myself out of my comfort zone and tried to be a normal 34-year-old adult. I thought I saw a future with this woman as I was sharing my struggles with her and she was sticking around. After our sixth date, she started asking more questions about my job situation. She asked me what she should tell her friends when they ask what I do for a living. I thought we were way past that conversation, but I was wrong. She did not know what to tell these friends and I knew it would become a bigger issue when she would have to tell her parents, who were both doctors. I tried explaining to her that I did not have to worry about things in the finance department and neither did she. She was concerned that she would have to support me and things started to go south. The relationship did not pan out. On to the next one.
I even tried dating women who had the same condition as me. However, as I said no case of CRPS is the same. These relationships did not pan out either. In addition to the failed online dating scene, I was also unable to meet someone in person. My friends or family have never tried to set me up with someone as they know how incredibly difficult my life is. I’m sure they don’t want to get involved in the situation as they do not even understand what I go through.
Although I have been unsuccessful in the dating scene, I continue to go out and try to meet a partner. I made the choice that I will continue to fight this condition and everything that comes with it. Although I have been unsuccessful, I continue to go on the apps and try to meet someone who can understand what I go through. On to the next one…