A while back I was commenting on a comment Ana had left on our friend Karen’s blog about her feelings regarding having Hermansky-Pudlak Syndrome or HPS. The comments had come from an exchange that took place on one of the albinism newsgroups. It isn’t my intention to comment on that exchange. I wasn’t there. It was in Spanish so I couldn’t have understood it had I been there. But, I did want to comment on the observations Ana made in her comment, and I saved the most serious one for last.
It’s the hardest one for me to write about because it’s emotional, which is why I haven’t tackled it during this past week with so many things going on.
Ana was expressing frustration with people telling her how to feel, or even worse, criticize how she felt. I identified with that strongly because I’ve been in the same position. Sometimes even the most well meaning people in our lives can say things that make our wounds hurt even more. They see us in pain and they want to make it better. Or seeing us in pain hurts them, so they want to push whatever is wrong under the rug and pretend that nothing is wrong.
The problem is most of us want to feel affirmed by the people around us. When someone tells you, “You shouldn’t feel that way,” it’s like a slap in the face because even if our feelings aren’t logical – it’s still how we feel. The word, “should” is probably one of the most dangerous words in the English language.
One of the things I do quite a lot of is talking to people with HPS. Often they need to share how they’re feeling and their spouses or families can’t handle listening because it pains them too much. Sometimes they don’t always want to share it on the listserv for fear of upsetting everyone else. Most often they just need to articulate how they’re perceiving things. This may sound really silly, but it seems like the most helpful thing that ever comes out of my mouth is “I understand why you feel that way.” And I do – I’m not just saying that.
Those of us with HPS are all at different places on this path depending on how old we are and what our health status is like, and how new our diagnosis may be. Ana, for example, is older than I am, has started to experience pulmonary symptoms and is the single parent of a young daughter. Of course she doesn’t feel the same way about her HPS as someone who might be younger and not experiencing any health issues.
I’m not a psychologist – just speaking from experience on my own emotional roller coaster these past four years – but we need to be allowed to feel what we feel. Those of us that have expressive natures need to be allowed to express what we feel. For me, just being able to communicate how I’m feeling or what I’m afraid of is often pure therapy in and of its self. I often feel instantly better (but not always great) just communicating my thoughts.
We all have different coping techniques, and we need to recognize that about each other. My brother, for example, can sit and listen to Dr. Gahl speak, and even if Dr. Gahl says nine scary things and one positive thing, the only thing Ryan really focuses on is the one positive thing. There’s nothing wrong with that. It’s working for him, although it wouldn’t work for me.
My coping technique is the complete opposite. I take everything in, research it, analyze it and sort of live with it. I figure out what the worst case scenario could be. I get upset and grieve about it, and then I reach a place where I’ve absorbed it and thus can live with it. From there, having looked at the worst thing possible, everything else is always good news.
For me, battling HPS happens on two levels – the medical level and the emotional level. I battle it on the medical level by keeping up with my health and participating in research. On an emotional level things like prayer, keeping this blog and reaching out to others fighting the same fight helps. While we must be allowed to feel what we feel, we must also recognize that part of this battle is emotional, and that sometimes we have to fight that aspect of it just as hard as we’d fight the medical half.
It’s the hardest one for me to write about because it’s emotional, which is why I haven’t tackled it during this past week with so many things going on.
Ana was expressing frustration with people telling her how to feel, or even worse, criticize how she felt. I identified with that strongly because I’ve been in the same position. Sometimes even the most well meaning people in our lives can say things that make our wounds hurt even more. They see us in pain and they want to make it better. Or seeing us in pain hurts them, so they want to push whatever is wrong under the rug and pretend that nothing is wrong.
The problem is most of us want to feel affirmed by the people around us. When someone tells you, “You shouldn’t feel that way,” it’s like a slap in the face because even if our feelings aren’t logical – it’s still how we feel. The word, “should” is probably one of the most dangerous words in the English language.
One of the things I do quite a lot of is talking to people with HPS. Often they need to share how they’re feeling and their spouses or families can’t handle listening because it pains them too much. Sometimes they don’t always want to share it on the listserv for fear of upsetting everyone else. Most often they just need to articulate how they’re perceiving things. This may sound really silly, but it seems like the most helpful thing that ever comes out of my mouth is “I understand why you feel that way.” And I do – I’m not just saying that.
Those of us with HPS are all at different places on this path depending on how old we are and what our health status is like, and how new our diagnosis may be. Ana, for example, is older than I am, has started to experience pulmonary symptoms and is the single parent of a young daughter. Of course she doesn’t feel the same way about her HPS as someone who might be younger and not experiencing any health issues.
I’m not a psychologist – just speaking from experience on my own emotional roller coaster these past four years – but we need to be allowed to feel what we feel. Those of us that have expressive natures need to be allowed to express what we feel. For me, just being able to communicate how I’m feeling or what I’m afraid of is often pure therapy in and of its self. I often feel instantly better (but not always great) just communicating my thoughts.
We all have different coping techniques, and we need to recognize that about each other. My brother, for example, can sit and listen to Dr. Gahl speak, and even if Dr. Gahl says nine scary things and one positive thing, the only thing Ryan really focuses on is the one positive thing. There’s nothing wrong with that. It’s working for him, although it wouldn’t work for me.
My coping technique is the complete opposite. I take everything in, research it, analyze it and sort of live with it. I figure out what the worst case scenario could be. I get upset and grieve about it, and then I reach a place where I’ve absorbed it and thus can live with it. From there, having looked at the worst thing possible, everything else is always good news.
For me, battling HPS happens on two levels – the medical level and the emotional level. I battle it on the medical level by keeping up with my health and participating in research. On an emotional level things like prayer, keeping this blog and reaching out to others fighting the same fight helps. While we must be allowed to feel what we feel, we must also recognize that part of this battle is emotional, and that sometimes we have to fight that aspect of it just as hard as we’d fight the medical half.
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