So you have just found out that someone you know and love has been diagnosed with acquired hemophilia A. The first instinct, of course, is how can I help? Here are a dozen of some of my suggestions, from the point of view of someone with acquired hemophilia A:
- DO
- DON'T be scared or shy to ask me questions. If I'm up to it, I will try and answer them the best I can. If I can't answer your questions, take the initiative to ask my doctors or other health professionals who can provide you more information on my medical condition.
- DON'T get upset if I tell you not to visit me at home or at the hospital. Loss of blood and many of the treatments for
acquired hemophilia A themselves cause fatigue. I'm not being antisocial; I just might not be up to having visitors or can't afford to pick up outside germs. (Some well-intentioned
friends and loved ones want to visit their friends at their homes or at the hospital and then end up asking them about how they are; if someone's in the hospital,
that means something medically serious is going on, and they may not have the energy to explain it all.)
- DON'T be disrespectful and noisy if you are visiting me in the hospital. (Some visitors in the hospital carry on like it's the school cafeteria with their cell phones and loud conversations. They have complete disregard that their loved one is going through a rough time in their life. Hospitals are not quiet places to begin with, with lots of noisy machines and doctors and nurses running about.) Keep in mind that I (along with everyone else in the same ward) am there for treatment, and I need rest and as much quiet as you can give me.
- DON'T feel slighted if I can't spend much time talking to you when you visit them at the hospital. Again, remember, I
am there to be treated for a medical condition, not to socialize. There may be times when you visit and I am deep in conversation with a doctor or a nurse about
proposed treatment or their prognosis. Be mindful that this is important to my health care while in the hospital.
- DON'T feel offended if I don't want to talk about having acquired hemophilia A or what they have been through. Sometimes it hurts inside when I'm being singled out for having a medical condition, as if the condition itself defines me. (A person with chronic illness tries to be as normal as possible, because who wants to stick out like a sore thumb? Also, it is important to note that people with chronic illness have to repeat for doctors again and again what conditions they have, and that process is tiring in itself. Every time I get seen in the hospital, it's like a parade of people want to talk to me and get as much information out of me as possible. I realize this is part of a doctor's education, but at the same time, it can be very disheartening and upsetting for a patient to be interrogated in such a manner when they are being treated for a serious medical problem.)
- DON'T treat me like I have the plague. Acquired hemophilia A is not a communicable disease and cannot be spread by casual contact or even contact of body fluids (as is the case with HIV/AIDS and other sexually transmitted diseases).
Above all, be understanding and compassionate towards me, as acquired hemophilia A is a serious medical condition with no known cure. People with acquired hemophilia A can live relatively normal lives, if the condition is kept in check. So...be there when I need you, it's the best gift you could ever give me.
M. Chang
17 November 2006