Have any of you experienced an unusual stigma from people in general that know you have an ailment? Say for example you make a lot of doctor appointments... do you sense that medical "professionals" kinda scoff when you talk about your malady? Do you feel like people are uncomfortable when you want to talk about it? Do people in your life minimize and sort of belittle your health issues and concerns?
My observation has been that my family and friends' reactions are not comforting.
Aaron, I have found EXACTLY the same things. I'm a trained psychotherapist (I qualified from uni last year and was looking for therapy type jobs when my heart problem kicked off) and have spent a lot of time analysing why this might be. As you say, the medical professionals and sometimes our friends and family, put such a lot of energy into dismissing, denying or minimising what we tell them, and there are lots of reasons for this, some simple and obvious, but I wonder if it's in part a little deeper.
Part of my training was specifically aimed at counselling health care professionals - in death & dying and palliative care - and they, possibly more than most people, tend to have a real problem accepting that people die. It sounds odd I know, but it's why - certainly in the UK - palliative care has only relatively recently emerged as a medical speciality. Our hospices are run by charitable organisations, not the NHS. Our system's ethos is 'death-denying'; the medical community are trained to preserve life. Anything that involves death therefore is a failure.
There are only two guarantee's in life and they are, if you're born, you're going to die. The only variable is how long there is between the two events. Why therefore are there thousands of maternity units but only a handful of hospices or wards in hospitals dedicated to palliative and end-of-life care? Because we as a society tend to be the three monkeys - the see no evil, hear no evil, speak no evil monkey dudes - when it comes to living alongside dying. If we ignore it, it might go away, and if it won't go away, at least we won't have to look at it. At it's most basic level, this is because humans are biologically programmed to survive and we don't like acknowledging that we won't.
I strongly suspect that this is part of why they play down what's going on. They don't want to hear it. I believe our families and friends react in the same way for the same reason. It's like how a kid puts his hands over his eyes and sings la la la - if he can't see it or hear it, it's not happening. I know of course there are dozens of other reasons for why the medical personnel treat us as they do including lack of time, resources, personal bias towards individual patients, the fact that they haven't experienced this illness themselves, insufficient training etc., but I do think that medical professionals, as well as our closest friends and family, choose not to accept or deal with what's happening to us because a primitive survivalist part of their subconscious won't accept that people die and conditions like yours, mine, everyone's here at VR could well result in death. So by assuming you're being a hypochondriac rather than believing you - as you suspect they're doing at your doctor's office - they don't have to deal with the fact you might die. If they convince themselves you're faking or exaggerating symptoms, they don't have to deal with them... abracadabra, I don't believe you're that ill... fear gone.
I'm sure many people will disagree with me on this and think it's just psycho-babble, and it may well be, but it's a very real phenomenon that society's 'death-denying' attitude is most prevalent in the medical community.
As to family and friends, it came as a huge shock to me to watch people I thought I could truly rely on draw away from me since I've had this illness. By that I don't mean that they literally go out of my life but for instance, my daughter who is 22 has always been like my best friend really. Nowadays, she looks actively bored if I start talking about my conditions. When I suddenly wince if I get a pain, she gets this 'oh god, what now?' look.
And as has already been mentioned, people do tend to think of heart things as 'routine' so unless they've had it themselves, you may as well tell folks you've got a boil on your backside.
Then there's the good old 'well, it could be worse' thing that I certainly hear from lots of people. It makes me want to say 'yeah and it could be very lot better too' but that would sound selfish. You know when people say 'there's always someone worse off'? I've never understood the concept of why that's meant to make us feel better. We're supposed to be glad that someone else is suffering more than us? Yippeee! Just yesterday, I went into where I work to talk to my manager about coming back to work. It's scheduled for the beginning of August unless anything else goes wrong, and after we'd talked about what restrictions there are on what I can do, she said 'well, it could be worse. Think of all those people in that awful earthquake'... erm, did I compare myself to an earthquake victim??? What she was subconsciously doing was looking for something to compare my problem to - something devastating but worse, because by doing that, my problems don't seem so bad, so she won't have to feel bad for me or about me... cos 'it could be worse.'
So, to conclude this long reply
I think the reactions of those closest to us, as well as almost any interaction we have with others who have to deal with us and our ailments, involve fear responses. Fear responses can be almost anything in nature -anger, sadness, alarm, denial to name just a few - and as
we represent the thing they are scared of, potentially fatal illness, they subconsciously choose to minimise the damage to their own psychological wellbeing by minimising what's happening to us. I also think this particularly pertains to young people who have potentially deadly illnesses. It's expected that old people will get ill so we all go into auto-sympathy mode when elderely people are seriously ill, but nobody wants to look at a young person with serious illness and think 'shi*, if it can happen to that person, it could happen to me too!'
Just my thoughts and maybe they're total crap
I should say that I have been more than pleasantly surprised at how supportive and helpful some people have been and I'm not looking to say everyone in my life is being dismissive. I'm sure you're not either Aaron, but the fact is, people do tend to get empathy/sympathy fatigue, which is why forums like this exist. If we could all share our fears and thoughts with those close to us,
every time we have a concern or just want to let off steam, would any of us be here posting? I doubt it.
