I felt rather down yesterday after various family members came over. It’s just awkward, they talk about their lives – jobs, buying houses, kids, holidays… and all I have to talk about is diseases, drugs, doctors, hospitals and how close you can get to death without actually dying. When I talk about ‘how I am’ all they can say is that’s awful and then there’s this awkward silence… then they say something well meaning like ‘at least it’s just another week and then you’ll be back to living life again!’. I’ve given up correcting them, it just causes another oh, how awful… silence. Then they ask me if I’m planning to pop any sprogs out. So I tell them that I don’t think I will because I’m too scared of passing the disease on, and even if I don’t, I’m scared of not being able to be the parent I want to be if I have relapse after relapse. Oh, how awful… silence. In the end I just sat in silence myself while everyone else chattered on about promotions and office politics. I wasn’t even listening, I was mentally working out which pills I needed to take next.
The other thing I thought was strange, and it wasn’t just them, it’s been everyone who’s not chronically ill… they just don’t empathise with physical pain, if you say you’re really depressed they show loads of sympathy, if you say you’ve been in so much physical pain you’ve thrown up and passed out, nothing.
Then there’s the ‘how sick you are’ scale, people have this warped idea of what trumps other things. In my head, being bedbound trumps most things (it’s not a competition, but imagine it was for a moment..) so you’d think logically that being bedbound would get you more sympathy, wrong. I say that I was bedbound for the best part of a year and they don’t even flinch. Then I mention as a side note that one of my many symptoms was heart problems and encephalitis (brain swelling like meningitis) and they suddenly freak out and act like I’m seriously ill. Well yeah, I am, I thought you would’ve got that from the being bedbound bit…? It’s all a complete mystery to me – how people react to the chronically ill. I haven’t been that bothered by the times I thought I might die. There were a few times I thought it was a distinct possibility and I was ok with that, I wouldn’t have chosen it, but I figured if it was meant to be, it was meant to be, and at least it would be an end to my suffering.
People who aren’t chronically ill don’t seem to think like this though, they see death as being the worst thing ever, and this trumps everything else, even endless pain and suffering. I guess this is why that guy with Locked in Syndrome after a stroke was denied the right to die. I’m tempted to go over there and kill him myself, I feel such sympathy for him and anyone like him, with such a poor quality of life, and then to have people who have no idea of what he’s going through deciding he should be made to live against his will… it’s an abomination. I just thank my lucky stars my quality of life is significantly higher than theirs, and if worse came to worse, I’m physically able to end it without help, although there were times where I wasn’t able to.
I don’t blame anyone for not understanding, if they haven’t been chronically ill themselves how would they? It just leaves me feeling really sad, like I’m never going to have that blissful naivety ever again, that I’m never going to fit in with ‘normal’ people ever again. I guess it all depends on my health, of how much of it I can get back. I don’t want sympathy, I want people to sympathise. It’s a bit different. Sympathising is more about showing you care. Ideally I’d like people to ask me about my illness, ask how it effects me, ask if there’s anything they could do. I would always tell them, just by asking me these questions you’re showing you care, and that in itself makes the world of difference. It’s the perfect antidote to the loneliness of chronic illness.
Knowing what to say to someone who is chronically ill is always going to be tricky. The worst thing you can do though is to not say anything, or ignore them out of fear of saying the wrong thing. It’s highly unlikely you’ll offend them, but by avoiding them you’ll add to their sense of isolation. Even as a chronically ill person myself I have had times when I’ve come across someone more sick than me, and I’ve worried about saying the wrong thing. Then I remembered how it feels to be the ‘more sick person’ and went to sit with them, or send them a quick message online. They can always ignore you, if they’re not up to it.
I have all kinds of theories about what goes on in the minds of the non chronically ill person. Maybe they’re phobic of negativity, maybe they’re scared of getting sucked into being an emotional crutch, maybe they don’t want to face up to the idea that it could happen to them too, maybe it brings back bad memories for them from something else. It could be any of those things. I think people need to be more self aware, really examine why they feel awkward around the chronically ill. Then the sick person needs to be aware of the myriad of reasons why people may find talking to them difficult and learn some tools to ease the situation.
I think where it went wrong yesterday was partly my family being afraid to talk to me about my condition, and partly me not really making any effort to steer the conversation onto something we could all partake in. It’s not all up to the other person, the sick person needs to also learn the skills to bridge the gap, I’m still fairly new to this chronic illness malarky and have a lot to learn.