Wednesday, 26 May 2010

So no-one told you life was gonna be this way

When my friends found out I was ill originally they each reacted in their own, incredibly personal ways. Just as there's a whole spectrum of responses a patient can have to being told such news the people who are friends of the patient have the right to respond in any way they feel is appropriate.

Sometimes it's with a certain stoicism, others it's with a real vigour and determination to help and for others still it just leads to floods of tears and snotters fuelled by worry.

All these responses are valid and, for me at least, they were all helpful.

While at the time it can feel like hard work trying to console someone who you just can't stop crying, there's also something therapeutic in it. I know some may view a friend crying over the person who is really ill as being selfish but I don't see it that way at all.

If you have a chronic disease you might well get the physical symptoms all to yourself but every single person you know suffers somewhat from the fallout of your condition and just as doctors can't tell you how to behave in regards your own condition you can't tell anyone else how to feel about your position.

The stoic are quite easy to deal with as they are just convinced it will all work out fine in the end but in a curious way the ones who are most vigorous in their claim that you'll beat this disease can be the hardest work. Put it this way, I was always convinced I would be fine - it actually never entered my mind that I wouldn't be. However , if you have people coming in to see you telling you you're going to be fine all the time then you start to wonder just why so many people are trying to reassure you.

It's often the ones who tell you that you'll be fine the most that are the ones who are actually the most terrified out of everyone. In my case a few people who were just like that came to see me less and less because they couldn't cope watching it all unfold. That's sad but I can kind of understand it.

For what it's worth most of my friends have been incredible. Almost all developed an attitude early on where we would allow ourselves to joke about it all. Of course this can appear crass to outsiders not familiar with the rules we play by but it works for us.

The reason I mention all of this is that as well as reacting to diagnosis in certain ways, there is also a wide range of positions in how much information people actually want about your treatment. For some a simple overview is all that is required but some really immerse themselves in the process, perhaps so they can feel part of it.

I've always been someone who wants to know all the details, no matter how grisly, and I sometimes forget that not everyone wants to know them. So the next bit is solely for those who really, really want to know the details.

Last week I was given a link to a blog of a woman who has in the last ten days undergone a lung transplant down in Newcastle. She goes into incredible detail and it's a fascinating read from my perspective and perhaps will go some way to answering some of the questions my friends have that I don't yet have the answers to.

Tori's Journal

I think it's an incredible read but recognise it's not for everyone.

It will take many, many posts to explain just how much my friends have done for me over the years. I do hope they all know how much I appreciate it.

4 comments:

  1. Keep up the good work Paul, this blog is very interesting and most of the points above I can relate to my own family and myself.

    Good to here Victorias blog is of use to you.

    All the best

    ReplyDelete
  2. It really is Phil.
    Like I say she goes into more detail than some of my friends would like but I'm very much that way inclined anyway so it's a great help.

    The only way to find out about this stuff is from other patients as the doctors aren't much help with a lot of this stuff.

    Even when the conditions that cause it are different a lot of it is relevant so I love reading it.

    All the best to you and yours fella

    P

    ReplyDelete
  3. It may be good for your friends /family to read Victorias journal as it is kind of disconnected from you...if you know what I mean?

    I think it is important for people to understand what happens even if it is hard to read, they dont need to communicate how they feel about it to you(causes too many awkward moments)but they do need to know.

    I battered myself about what my sister was going through without knowing what really was going on, she didn't tell me... as per your points above there are things you shield others from in order for you to protect them.

    I hope writing your blog is helping you to say what you really want to as I feel that it can be nothing but positive.

    Keep strong and know that everyone close to you is thinking of you.

    You know how to get a hold of me if you ever need to.

    Stay strong Paul you are an incredibly strong person, you may think that is a bit profound coming from me, a guy that doesn't really know you but I know the strength it takes to live life.

    Peace and love

    Phil

    ps...sorry for the long comment I get carried away sometimes.

    ReplyDelete
  4. As perceptive as ever, keep up the writing Paul - it's brilliant and you're obviously talented.

    Take care,

    Nicola

    ReplyDelete