I read a blog today by a lady called Toni Bernhard. I’m not intending to copy as we all have our own stories, but her headings made such a lot of sense – and so I hope she won’t mind if I use them. Chronic pain, chronic illness – there are hundreds and hundreds – and many more people who suffer day and year in and out. Mine is specifically arthritis – and a severe and chronic mobility and pain issue that seems to have crept up on me so fast I still can’t quite believe it.
We mostly all have people who do a lot for us – my amazing people are my husband and my son, and also people I have met through forums or friends on Facebook, who know what is happening and always comment positively to lift my spirits, and to those people I am endlessly grateful.
However, Toni is right – there are things you really wish you could say, but don’t.
1. The grief I feel over the life I’ve lost.
It is one of those major life stressors, like death, loss, separation, moving away – endings of all kinds.
There is a lot to grieve over, yet I didn’t really know that until now. My parents had many chronic health issues between them. I thought I’d avoided them all. And I certainly never considered grief. Surely getting to retire early is a bonus!
Now I know that there is a lot to grieve over — I’m pleased I trained to work online, because if I’d still been a teacher, for example, I would have had to leave work altogether. There is the loss of income, not being able to go out alone, the loss of independence, saying goodbye to any real activity – I’ll probably never get back up a mountain, manage the boat, join in runs or hikes or activities that others write or speak about and take for granted, and it’s lonely. My life is changed forever. There is a big dark hole where ‘I’ used to be.
Mostly I’m fine. It’s not like losing a partner or a child to death. At least I have a life and I intend to make the best I can of it. Most days are good and I can laugh and joke and be upbeat about this. If someone asks how I am of course “I’m fine” – the most widely told lie. But sometimes it just comes out of the blue. Something is said, or read, or seen, or thought and suddenly there are tears – where did they come from?! And it can be terribly intense.
It’s the whole process – and we’ll go with the Kubler-Ross 5-stage model here.
Denial – this isn’t happening to me. It’s a mistake. The scans are wrong. It’s not as bad for me as for others. Anything to shut out the magnitude of what has just been dropped on us.
Anger – “why me?”, “This just isn’t fair!”. Why not? It has to be someone – ok that doesn’t help, but that’s what I’ve been telling myself. I don’t know who I’m angry with. Actually there’s only me – there isn’t anyone else I can be angry with.
Bargaining – anything to extend things. Having replacements can fall into this category – I have new hips and am about to have a new knee – but whenever I have something replaced something else seems to be wrong.
Depression – “What’s the point?” I can’t do things, why bother trying? This is when I start to avoid people and things.
Acceptance – looking forward to this one!
And there is always someone worse of isn’t there? Well of course there is – but it really doesn’t make you feel any better.
2. I feel as if I’m letting you down.
My husband is great. However, I do wonder why he would want to be with me – especially now. I’m more trouble than I’m worth like this. My son – I try to do what I can with him but I feel guilty when he needs attention, wants to go out and do things – it’s so rare! – that I feel terrible if I just can’t do the things I used to not so very long ago.
I feel I need to apologise for not being able to join in, for being in pain, for being too tired (and arthritis and pain make you unbelievably tired!)
I feel as though my pain and limited mobility, and that it is getting worse, has ended their lives too. I was there for them, and now the tables have turned.
I can no longer even pretend my prospects for contributing to the household income are going to get any better. Sometimes it feels as though hope has gone too.
As my mum says, well you just have to get on with it don’t you – you have no choice – everyone else needs looking after – I had to do it – I can do anything I put my mind to …. yes – that’s guaranteed to make me feel worse. Especially as she never asks how I am (because I’m just like her apparently so should just accept it as she does!), but will ask about my family (great 🙂 ) or tell me about my brothers whose lives are falling apart as a result of their own behaviour and attitudes (not so great 😦 )
3. A chronic condition can be embarrassing.
I always set unrealistically high expectations for myself and then judge myself negatively when I can’t meet those standards. I’m a perfectionist. But I’m trying to get better 🙂
We live in a culture that repeatedly tells us we need not be sick or in pain. Also, we have this British stiff upper lip – we pull ourselves up and just get on with things and don’t complain.
Guilt creeps in too – as though I did this to myself and it’s my fault I can no longer be the person others expect me to be. Do they expect it? – or is that another unrealistic expectation of my own?
When I am asked to do something I have to now think about whether I can. I have always wanted to go to Italy, among other places. I’ve never been abroad beyond 4 days in Paris where i was pregnant and ill, and 4 days in Disneyland Paris where my son was ill. The opportunity was finally raised and I’m having to say no. There are all sorts of places I would like to go and see, but I can’t walk there or around them. To do it my husband would have to take me in a wheelchair – not fair on him. We’d be in the way of others – not fair on them. I’d slow everyone down.
And in a future where we try to keep our private lives private, I’d have to declare to the world my most inner secrets of my health – that I am in pain, I am stiff and sore and can’t move or stand or walk. It’s like saying I’m old, fat, unhealthy – but it’s my own fault – I should be young, slim, fit and up for anything.
Now I feel guilty because I have someone else to clean my house, touching my things, being in my space – because I can’t do it myself, but in telling others I feel it makes me sound snobby – as though cleaning my own house is beneath me. I can’t go out to work any more. Online work is limited and I will never earn a great deal of money. The pressure is on my husband to work, look after us, look after me! – and also earn enough somehow to get us a home of our own and keep the household going. I feel helpless in the pressure he has on him because of me. However, if I had a choice, I would certainly be independent. Being dependent is not something I would wish on anyone – that feeling of not being entitled and having to ask for things when you don’t earn or have the ability to do it for yourself.
So to my husband and son – I love you – I don’t want to be like this and I am grateful for all you do for me. But it sad, and embarrassing and lonely here. I feel I should be better for you – and I’m doing the best I can.