Something I've wanted to write but have been too afraid to.
I always see articles on Facebook "What it's like to date someone with a chronic illness", "What it's like to date someone with an incurable illness", "What it's like to date someone with chronic pain".
I haven't seen an article saying "What it's like being in a relationship for someone with an incurable illness". So here it is.
I was in my previous relationship when I got diagnosed. We were happy and in love. He dealt with it just fine. Partially I think because we were already in a serious relationship and he felt as though he had no choice. He never complained. He never blamed me. He didn't love me less.
When things didn't work out I worried that I would not find someone that would be understanding and choose to be with me. There's a difference in already being in a committed relationship when getting diagnosed and having to tell a new guy you are dating that you are sick.
My heart hurt. I really didn't think I would ever find someone that would be willing to date me knowing what I had, because why would you? Why would anyone walk into a relationship knowing the other person was sick?
Those were the thoughts going through my head. Iv'e always struggled with my self worth. I don't think I am pretty. I don't think I have a nice body. I am not what guys want. So to put all of those things together and then add EDS and POTS to it, no one should want me.
I met Zach last April. We texted for a while and then he asked to take me to dinner. I really liked him but I was so nervous to start dating again. We went to dinner and the whole time in the back of my mind I was thinking "Act normal. Don't move too fast or something will pop. Don't stand up fast and pass out". Every move I made was carefully thought out. I wanted to appear normal. I even took all of my braces and tape off.
I didn't know what to expect after that. Again, I don't think that highly of myself so part of me wasn't even worried about telling him because I didn't think he would be interested in seeing me again. But he was.
I went over to his house the next night and we watched a movie. I thought I was being as "normal" as possible, until he asked "how are you comfortable sitting like that". BUSTED.
I decided it wasn't fair to keep it from us. So I told him. I definitely down played it. Just told him I had something called EDS that made me really flexible and that sometimes I would pass out. But anyone who knows my boyfriend knows the first thing he did when I left was research the crap out of it.
He took the news like a champ.
I thought the hardest part would be to tell him. Turns out the hardest part is throughout your relationship dealing with all of the guilt and emotions.
He asked me to be his girlfriend. I kept saying no. Part of me wasn't ready for a serious relationship but mostly I felt like if I said yes it would make me a selfish person. I didn't want him to take on the burden of dating me. I didn't want to ruin his life or make it difficult.
I remember being SO nervous to meet his family. In my mind I thought when they found out what I had they would think that there son deserved way better than me. To this day I still think that he does deserve someone so much better.
We have been dating for over a year now and I still struggle daily with feelings of guilt and worry. Since we have started dating I have had 3 surgeries, 1 ER visit and probably 10,000 doctor appointments. There has been multiple times where I have passed out in front of him, dislocated things, cried because I was in so much pain, cancelled plans and even snap at him because I am tired and in pain. Even after all of that he still stayed. He never even thought about walking away. He rubs my muscles when Im sore, he helps me put my joints back in, he goes to doctor appointments, physical therapy and surgeries with me. He lets me be angry. He lets me be frustrated. He holds me when Im scared. He holds me when I cry. He holds me when I can't handle the pain anymore. He takes care of me after surgery. He is constantly asking me how I am feeling. And not once has he ever acted like it was inconvenient to have me in his life.
He gives me no reason to feel the way that I do. I think it is just part of the diagnosis.
I know not every guy is as patient and caring as my boyfriend. It takes a real man to walk into a relationship ready for what the future has in store for me. Not all guys would be able to stay in a relationship like this. I am one of the lucky ones and I wake up every morning SO SO SO grateful that I found him.
