My boyfriend has been away on tour for a while and he's about to get back to the city and I cannot wait! And it got me to thinking about Hemophilia and relationships. I have always been so concerned about me and my illness that I sometimes forget how it effects the people who care about me.
Growing up with Hemophilia, family members always make certain sacrifices to help us live a normal life, and my mother was no exception to that. And maybe it is a selfish way of thinking, but I grew up expecting that. And if something were to ever happen to children I have in the future, I would do the same for them.
But growing up around people knowing and understanding your condition is a BIG difference than dating. Not only are you trying to find someone you are compatible with emotionally and physically, but you are also trying to find someone who can understand the physical demands brought on by being a hemophiliac.
I've dated around, a lot. And I have run the gamut with reactions: from supportive, to ignorant, to just plain mean. I will try not to use names, so if people reading this know who these stories are about... Be kind. This is about experiences, not about what's right or wrong.
One of my first eye-opening experiences was with an ex-girlfriend of mine. (Don't sound so shocked. I didn't ALWAYS know I was gay, even though, apparently, everyone else did). I got a spontaneous bleed in my left iliac muscle. Very bad. I was in bed for almost two months and then wheelchair, crutches, cane, the works. Anyway. She came and sat by me almost everyday. Watching movies and getting pizza. She was fantastic, but the time in bed gave me a lot of insight and I realized it wasn't working. About a couple of weeks after I was back in school, I told her I didn't think this was working anymore. She got angry, slapped me across the face while saying, "I hope you bleed." I cant blame her. But it made me realize Life Lesson #1: to always be honest. By waiting until I was a little healthier, it made it look like I was using her to get better, which I wasn't, but I can't blame her for thinking it.
Flash forward a couple of years. College. I met a really nice boy, and we dated for a while. After a messy break up I started seeing someone else, but tried to remain friends with the ex. And then a disaster, I pulled my right hip in dance class and down I went. Well... here comes independent Anthony, with a bleed in his right hip, but I couldn't drive the car to the hospital. I knew my ex had a car so I asked him to take me down to my Hemophilia Treatment Center (HTC). He immediately said yes. So here I am, still in love with him, although seeing someone else, and I assume that with him bending over backward and taking a day off of class to help me get better, he must feel the same way... Life Lesson #2: just because someone accepts the fact you need more support than a normal friend would, don't assume it's more than that. It's just support... (Btw. We still talk and are amazing friends today.)
One of my first eye-opening experiences was with an ex-girlfriend of mine. (Don't sound so shocked. I didn't ALWAYS know I was gay, even though, apparently, everyone else did). I got a spontaneous bleed in my left iliac muscle. Very bad. I was in bed for almost two months and then wheelchair, crutches, cane, the works. Anyway. She came and sat by me almost everyday. Watching movies and getting pizza. She was fantastic, but the time in bed gave me a lot of insight and I realized it wasn't working. About a couple of weeks after I was back in school, I told her I didn't think this was working anymore. She got angry, slapped me across the face while saying, "I hope you bleed." I cant blame her. But it made me realize Life Lesson #1: to always be honest. By waiting until I was a little healthier, it made it look like I was using her to get better, which I wasn't, but I can't blame her for thinking it.
Flash forward a couple of years. College. I met a really nice boy, and we dated for a while. After a messy break up I started seeing someone else, but tried to remain friends with the ex. And then a disaster, I pulled my right hip in dance class and down I went. Well... here comes independent Anthony, with a bleed in his right hip, but I couldn't drive the car to the hospital. I knew my ex had a car so I asked him to take me down to my Hemophilia Treatment Center (HTC). He immediately said yes. So here I am, still in love with him, although seeing someone else, and I assume that with him bending over backward and taking a day off of class to help me get better, he must feel the same way... Life Lesson #2: just because someone accepts the fact you need more support than a normal friend would, don't assume it's more than that. It's just support... (Btw. We still talk and are amazing friends today.)
Well. The other guy I was seeing at that time was still in my life. And I was injured and on a factor regimen. So here I am, infusing on a regular basis. And he always wanted to be there when I did. To watch. To learn. And, I thought, to hold my hand because I hate needles. Then one day he asked if I had a couple of clean syringes. Life Lesson #3: they may care about you and your illness, but not for the reasons you may think. (This person and I have fallen out of touch, but are still friendly and he has COMPLETELY transformed his life. Good on ya.)
Then I got healthy. Toured. Performed. And my bleeding disorder wasn't really an issue, so of course, everyone was totally okay with it. I may have had some other issues, we all do, but relationships aren't easy. And then I meet the boyfriend. Let's call him... Schmyler.
There have been a couple bleeding episodes, but none ring out in my mind more than an episode that happened in November.
The story behind this is very long and drawn out. It will make a splendiferous blog post later on. Basically, I woke up one morning and hit my head against the wall (I wish it was something worth getting hurt over. Trust me, I'm not just trying to be G-rated). I thought I was fine. Got in the shower for work and got super dizzy and passed out. I was at Schmyler's place. So I went to the hospital. He worked a double that day and after that double he came to the ER and sat with me until like 4 am and then went home to sleep before another shift the next morning. After a long drawn out story, I got to leave the ER only to be called back in. I think that's when it hit him that me bumping my head could actually be a big deal. He went with me back to the hospital. Sat with me. Stayed with me in my little overnight observation bed and held my hand during the infusions. Life lesson #4: when you find the one that doesn't freak... Keep them.
Especially if they still want you when you look like this.
So call, text, or tell your loved ones you love them. Be it your girlfriend, boyfriend, best friend, or even your pet. It's hard to be loved... we all have our abnormalities, and if the ones we care about can deal with all of them, then they are the ones who deserve our love in return.
Till we meet again...
Hi Anthony! I'm Amelia! I discovered you on Twitter by following Ryan Seeley, whom I discovered in the process of trying to do research for a novel I'm writing featuring a gay hemophiliac character. Ryan has very kindly and graciously agreed to help with my research by fielding some of my questions about daily life and getting involved in relationships (the book is an m/m romance) for someone with hemophilia.
ReplyDeleteRyan seems to be really busy, though, and I definitely don't want to impose upon him if he doesn't have the time, so I thought I would maybe seek out some other sources so I'm not burdening him with a correspondence he doesn't have time for.
If you would be willing to correspond with me and answer some of my questions, I'd be extremely grateful. My can contact me at ameliacgormley (at) gmail if you're at all interested, and if not, I certainly understand. Best of luck to you and thank you for your time.
Amelia