Posted on behalf of community member Mary Ann Massolio, Hematology/Oncology Social Worker,...
A Few Things That I Want People To Know About My Bleeding Disorder
I feel that over the past 23 years of my life, there's been a wide variety of thoughts and opinions from other people when it comes to my bleeding disorder, and believe it or not, these thoughts and opinions impact me, whether they be positive or negative. So here are just a few things I want you to know about my bleeding disorder.
First of all, I know it's a very large word and you probably have not heard of it before. Heck! You probably can't even pronounce it, and let me personally tell you, that's perfectly okay! I would rather you be honest and tell me that you have never heard of it, instead of pretending to talk about it like you really know what it is, when I can clearly tell you have no idea what you're taling about. Believe me, I can tell if you don't know anything about it, I am an expert on Afibrinogenemia after all! Please don't be afraid to ask about it, I have no problem talking about it at all with you.
Secondly, over the course of my life a lot of people have assumed that the bleeding disorder that I have must not be all that big of a deal for several different reasons, but the biggest reason that I have come to realize is that because you can't physically see my bleeding disorder, others seem to think it must not be that big of a deal. I've had people tell me, "well you look healthy, so it must not be that bad". I can still "look" physically healthy and have a bruise the size of a grapefruit on my leg, causing me pain when I walk. I would just like for people to understand that just because you may not be able to physcially see what is going on inside/on my body, it doesn't make my bleeding disorder any less of a real issue.
Thirdly, the treatment that I receive takes almost two hours to infuse. That doesn't count the time it takes to mix my medicine, and the time it takes to find a vein. Any time I receive a treatment I break out in hives around the infusion site, so I take pre-meds to try and prevent this from happening. The pre-meds make me sleepy and the treatment itself makes me not feel good. By the time a treatment is complete, from beginning to end, it takes close to five hours. I don't self infuse because personally, it's just something that I don't feel comfortable doing. I don't infuse prophylactically, and my vein's aren't the greatest. I also, to this day, have a difficult time not passing out every time a nurse tries to get a vein. Too many traumatic experiences? Probably, but getting the IV started is the worst part of the whole treatment. There's been times where I've gone a whole year without needing a treatment, then there's been times where I've needed a treatment every two months within a year. Eventually, I'm sure I'll learn to self infuse and maybe even infuse prophylactically, who knows. I have learned what I can and can't do, while taking care of myself and living a healthly life. I would just like it if others didn't force what they do for their treatment regiment on me, like there's only one right way to go about it. I respect how others treat themselves, and I would just like others to respect how I treat myself too.
Lastly, I'm still a human being who lives a relatively normal life. I don't ask for sympathy, I ask for understanding.