I had a very interesting and enjoyable day yesterday at the Royal Brompton Hospital’s ACHD (Adult Congenital Heart Disease) Patient Conference . All the speakers were excellent and I learned lots of new things and met some new people. However, I was slightly disturbed by the attitudes of a few of my fellow patients. One man said he didn’t see why he should try and have a healthy lifestyle because he hadn’t asked to be born with a heart condition, unlike the people with acquired heart disease caused by over-eating and smoking. This is just total nonsense, obviously, but I guess it’s his choice. The opinion that most disturbed me is not, I suspect, a new or even unusual one among the ACHD community; which is that, and I quote:
” there are two kinds of heart patients; the ones that get on with it and the ones that do the self-pity thing.”
How easy it is to divide people up into kinds. I know it was probably an off the cuff remark, but I think it reflects a general attitude among many ACHD people (generally patients, not medics, in my experience) that it is not OK to feel sorry for yourself, or complain, or feel down (or at least not show it if you do), or be embarrassed by your scar, or ask ‘why me?’ or be miserable in any way. Of course it’s good to have a positive attitude if and when we can – it’s better for our hearts, after all. But I think we also need to give ourselves a bit of a break and recognise that the people trying the hardest aren’t always the ones who are running marathons or spieling the fighting talk and the positive thinking clichés. Just because people admit they’re finding things difficult doesn’t mean they’re not ‘getting on with it’ – if they weren’t they wouldn’t be here! On a related point, people who have depression or other mental health issues as well as ACHD are struggling (at least) doubly hard!
I think there is a certain pressure on anyone with a long-term health condition to be ‘a fighter’ or equivalent (see, e.g. the phrase “heart warrior”, often used in relation to children, something I’m particularly uncomfortable with). Even as adults, we can sometimes feel like we’re letting our loved ones down if we don’t cope as well as we might. I remember being in hospital (aged 30) after heart surgery and a little setback caused by a stomach ulcer (caused by the stress of the operation) feeling massively miserable about the fact that I wouldn’t be able to go home as soon as I wanted to and that I wasn’t allowed to eat. I asked the nurse to tell my mum she couldn’t come and see me because I didn’t want her to see me being so miserable and being less well than I had been. I was so angry and sad because (a) I felt sorry for myself and (b) I felt like I was going to disappoint my mum and let her down somehow because I was having to be back on a drip and in bed. It seems like madness when I think about it now, but it was very much the case for me at the time.
I don’t feel like and am not a fighter or a warrior or anything of the kind. I get scared, I worry, I cry, I complain, I think it’s unfair, I get depressed, I get angry, I wish I could do things I can’t do, I go through periods of denial, I feel sorry for myself, I want to be ‘normal’. Yes, still. I do wear my scar with more pride than I used to, if that helps. And I get on with it, because that’s the only choice I have.