Quality of life….I am in contact with the hemophilia community for more than 15 years and if I am not wrong the concept of quality of life is new for PWH and their families.
I like the term but I don’t agree about how it is used. Let me explain to you my point of view: it seems that the priority is to have Factor for everybody and as prophylaxis. It would be marvellous I totally agree. It would prevent so much hemarthrosis and would make some severe hemophiliacs becoming moderate or mild…almost asymptomatics….(without symptoms of hemorrhages ) but what I SEE , what I have to live with in day basis is another reality.
It is the DAY TO DAY reality of a patient who has to DO A LOT WITH FEW ressources. Material ressources such as home therapy, or prophylaxis aren’t a reality for most countries in the world. I agree too that efforts must continue to reach that dream.
But as the title says I am a server of the psyche, a psychotherapist, and as one I am used to work with what I receive and stick to that to transform things. These “things”are the inner aspects of personality, that claim for transformation.
For example, imagine how would you BE with a family who knows that in other countries, Factor is available as prophylaxis ? what feelings arise? envy, rage, anger, lack of motivation….BUT ALSO other feelings and attitudes can arise : let see what my center offers? what is hemophilia FOR ME? what can I do in my way of seeing things and change to improve my quality of life?
Because what I believe is that if we spend time just looking outside of ourselves, and pity our conditions…we lose time and the oportunity to have GOOD IDEAS. Good ideas come when we realize what is missing in our way of doing things, and when we change our mind.
quality of life is a matter of HOW we see things that happen to us:
We can change our ideas, we can change our mind about the way we use to think of hemophilia, being sick, troubled, in rehabilitation, in love… but OUR BIG EGO don’t like to change its mind!! that usually makes him feel “unstable, incoherent, irresponsible….etc etc” good excuses to blame always the others for what we are, for what is happening to us.
I have seen men and women with hemophilia that depressed, but have seen through their depression and have understand new things, new ways of living. Quality of life is also an attitude where the patient is not always a patient, as he sees that he is more than a person who has hemorrhages…he is a son, a friend, a active member of his surrounding even if he can;t move! he is a person who can make friends, can be helpful as help people sometimes.
Quality of life is not only about material aspects but also about psychological ones. To do psychology is to have a deeper look on events. And in that way events transform themselves into “experiences” .(James Hillman in his book Re-visioning Psychology explains that beautifully)
And with a Prevention Approach it seems easier right: at the center we work with the little ones and prepare them with early self-infusion, or they learn about hemophilia with flash cards, playing, drawing. They learn how to take care of themselves early.