Every day millions of people all over the world are being diagnosed with an incurable illness. As the population grows and more illnesses are being discovered, those afflicted may wonder what that means for their dating life. In 2008, I was diagnosed with Ehlers Danlos syndrome, a connective tissue disorder affecting my collagen. Collagen is the glue that keeps your body together. I can dislocate every joint in my body because of the lack of collagen in my body. Newly diagnosed in 2008, no one could tell me what this illness meant for me long term. Since they didn’t have the answer for that, then they certainly didn’t have the answers for what my dating and relationship worlds would look like post diagnosis.
At 25, being diagnosed with an illness that has no cure isn’t an easy pill to swallow. But I was determined to still be able to live my life to the best of my abilities. Of course, this didn’t happen right away. A lot of soul searching and unfortunately, a lot of alcohol consumption happened during those first few years of my diagnosis. I can’t even tell you what my Summer of 2010 looked like. It definitely was a whirlwind blur of dancing, clubs, and alcohol. But with anything, if you do it too much, things get old. So in 2011, I set upon documenting my dating life as a disabled person.
Telling any potential new partners you are disabled or have an illness, but you look completely healthy, isn’t easy. Most, if not all, assume I am exaggerating about my illness and its symptoms. Ehlers Danlos syndrome, being a newly diagnosable illness, didn’t have a lot of research to back up what I was saying that my body was doing to itself. Some guys I dated thought I was lying, but, hey, scars don’t lie. I have had 59 surgeries, I have 12 more pending that I have put off so I can try to live a life without seeing an operating room every few months. Dating over the years has been interesting to say the least. You never know how someone is going to react when things get really real. I’ve had many surgeries where the guy I was seeing, who supposedly loved me, was MIA. Most of the time, I prefer to do things alone, but I wouldn’t have minded one of those guys I dated to be there for the after.
There is no training manual for dating with an illness or disability. Self-help books claim to help you through the dating process, but none of them will be based exactly on you personally. You can take certain tips and mold them to apply to your situation, which can be helpful. Since there aren’t many books on dating with an illness, I set upon writing one myself, Dating While Disabled. I know this book won’t help everyone out there with an illness, but I am hoping it can be a guide on the good things I have done in my dating life and things you shouldn’t do.
If you are single when you are first diagnosed, I highly recommend you take some time for yourself. Learning about your illness needs to be a priority, a bigger priority than dating. You have to learn to accept that this is your life now. And that will take time. It took me four years to accept my illness and learn to embrace EDS and all it has done for me and against me. Learning to accept your illness isn’t something that happens overnight. There will be tears, frustration, and depression. But you will get past that period in your life and then it will pop back up in the most inconvenient time.
Dealing with your illness will be a lifelong love-and-hate journey. But I beseech you to look past the negatives of your illness and the side effects that can cripple you. If you do not learn to accept that you have this illness, no one else will be able to see past it either. I’ve learned over the years that if I continue the poor-me mantra, everyone else around me will only see my illness and the other parts of myself that the illness has nothing to do with, will no longer be there for them to see. I call this TMI, Too Much Illness. If you’re having a bad day, absolutely vent and do what you need to get through the day. But if you are seeing more bad days than good, it’s time to re-evaluate your thought processes. I used to be consumed by EDS and what it was doing and some days even when my symptoms weren’t that bad, I still only focused on it. Which caused my brain to think about the pain, which of course then amplifies the pain you are in. Making it much worse than it actually is.
Now that I am 10 years post-diagnosis, I still have bad days, but they aren’t as consuming as they were before. I’ve learned to accept that some days I want nothing to do with the world. And on the days I do want to be involved, I make sure I am completely present in the moment. Sometimes, you have to just be present. Thinking about all you’ve been through in the past on a daily basis will not help your state of mind. You literally make yourself stuck in the past and constantly wondering what your future may look like because of your past struggles. By doing this, you are allowing yourself to forget what you can do for yourself today, whether that’s dating or just living your best life.