Living with hemophilia (both general and personal questions
I’m researching for a book I’m planning to write featuring a character with a bleeding disorder. Most likely Hemophilia A, moderate, possibly severe.
The book is from first person POV, so I really need to be deep in this guy’s head and convey his experiences in detail. I also want to handle the subject accurately and very respectfully. I don’t want to sensationalize or make assumptions. I want to be honest and straightforward with it.
However, I’m having trouble finding specific, detailed information on what daily life is like with a person with this condition, and no luck whatsoever finding information on what issues would specifically affect a gay man. Try doing a google search for any variation of “hemophilia” and any variation of “gay” and try not to come up with mostly results relating to HIV. The contact at an Hemophilia Treatment Center I emailed said I’m actually on the cutting edge and she’s not surprised I’m not finding the information I need, because there really hasn’t been any research done relating to gay hemophiliacs.
I’ve spent a lot of time since I began researching this scouring “living with hemophilia” resource sites, and the problem is while they tell you things to look out for, they don’t tell you how frequently these things happen, which really makes it look like an absolutely catastrophic condition and how could anyone live with all these restrictions? I don’t know how common the issues they caution against are, and how much of it is just “it’s not likely, but it COULD happen, so be on the lookout.” If I were to portray my character according to what I’ve found, he wouldn’t be able to do anything!
Some information:
My character would be born about 1980, so while he would have been a young child in that window when there were still HIV-infected blood products on the market, that’s not where the story is going. He’ll have dodged the bullet on that one.
He’s not in denial about his condition, but he does really chafe against it. He wants things he thinks he can’t have. He didn’t want to swim or bike or play golf for exercise in high school, he wanted to play lacrosse. He knows he can’t get the extensive tattoos he wants (except perhaps in small increments) but he’s so in love with body art that he became a tattoo artist and he really wants to make his body a canvas head to toe. The main thing holding him back isn’t the danger, it’s the fact that the bleeding might push out the ink and make the tattoos look bad despite the danger. He doesn’t want gentle, careful, vanilla sex, he wants hard and rough and even wants some S&M.
He WANTS all this, but he’s not quite reckless enough to pursue it as someone in denial would. So instead he is really quite disheartened because he’s never satisfied, he always feels like he’s settling for pale substitutes to accommodate his condition and a lot of the journey he takes as a character in this book is figuring out the middle ground (with his new partner) so that he can have a life that fulfills his needs while still not being recklessly unsafe.
(of course, this premise for the character’s level of limitation is based on the somewhat alarmist perspective I’ve gotten from my research as I mentioned above. Maybe he doesn’t really have those limitations, I don’t know.)
What I am looking for is any hemophiliacs (particularly gay) here who can give me some up close and personal — and yes, intimate — information (or if you happen to know a hemophiliac, please send him my way; he can contact me using the form at http://ameliacgormley.com/about).
Here’s a sampling of some of the questions I would need answered:
Daily life: what’s it like? What are the mundane details the general “living with hemophilia” sites I’ve been looking at are going to miss?
What dangers (aside from of course, bumping joints on things/having accidents that can lead to injury) would a person with a moderate-to-severe condition need to be on the alert for on a daily basis?
How common are spontaneous joint or deep muscle bleeds in a moderate to severe case of hemophilia? (if he’s in the “moderate” range, it’s probably closer to the severe end.)
How often would he infuse (2-3 times a week as I’m seeing mentioned in my research?) and how significantly does prophylaxis mitigate the common, everyday hazards?
Can he do things like go dancing at a club, or is even that level of vigorous activity not advised?
Can he use, say, hot tubs/saunas/steam rooms, or should he avoid that degree of heat exposure?
Of course, this is a romance so sexual activity is going to be featured. Sexually, what pitfalls should he look out for?
(for gay men or straight men/women who engage in anal sex) Can he bottom, or is the abrasion/possibility of minor tears too big a deterrent? Would he suffer bruising/swelling/etc afterward? Would how recently he’s infused make a difference in his ability to bottom?
How common are penile bleeds? The “living with hemophilia” websites (which really only deal very vaguely with issues of sexuality and barely even touch homosexuality except to advise safer sex, which, duh) seem a little scary talking about looking out for penile injuries and bleeds. Is this alarmist or is it actually a common problem? How dangerous are they and how are they treated? Once again, would infusing mitigate this danger?
Would the chances of a penile bleed be increased by prolonged, unsatisfied arousal? Could he and his partner do some edging/orgasm denial or would that be dangerous?
How common are iliopsoas bleeds? Again, are the sites warning about them being alarmist, or are they a common issue?
Just how bad and/or dangerous ARE hickeys? Are they only bad on the neck, or are they bad all over? What about rough, passionate kissing? Again, can infusing mitigate these issues? (I assume biting is definitely out of the question.)
If he’s giving head, can he deep throat? Can he be face-fucked? Or would this pose a danger of bruising his throat, causing swelling that could suffocate him, etc?
What might happen if someone gets too carried away or rough? Can he feel safer cutting loose a little more if he’s recently infused? What is the window between “it’s okay to relax a little” after infusing to “whoa, better not do that right now?”
Hairpulling? Should it be avoided due to scalp bruising?
He has a little bit of a masochistic streak and wants some pain with his sex, how would he go about that safely? What about things like nipple pinching/clamping? I assume bondage would be out due to stress on the joints?
Clearly, of course, anything that could cause deep tissue damage or bleeding like flogging/caning/whipping are out. But what about more surface pain stuff, like spanking? Would that extent of surface bruising be problematic? Would infusing mitigate the problem to some degree?
What about candle wax, heat or fire play? Is there a significant danger from mild (barely first degree) burns? Electricity play, such as with a TENS unit or violet wand—possible? Or could the current cause bruising or bleeds?
I am sure I will have other questions as I go along, but these are the ones that come to mind. Ideally what I would like to find is one or more people willing to correspond with me about their experiences and perhaps look over sections of the manuscript to verify that they are accurate.
Again, to contact me for a correspondence, use the contact form at http://ameliacgormley.com/about
Thank you!
