If you read my post from yesterday, you may well have picked up on a clue as to what I had in mind to write about today. In fact it was yesterday’s post that put it into my mind, writing about the constant adjustments meant I started to think back over those that I found easy and those that were a real struggle, none worst of course than the adjustment around being diagnosed which I have written about in bit and pieces throughout my blog, but it isn’t that I want to write about today, as I wrote yesterday I realised that I have never written about something bigger than grief in many ways and that is guilt.
We all know that chronic illness frequently has no cause, those of us with autoimmune conditions know that best of all, but that doesn’t stop the guilt. For me the guilt was horrendous, Adam and I hadn’t been married a full three years when I was diagnosed with a condition that was rapidly changing my physical ability, my guilt was there in thick layer upon layer. We married on Adam’s 21st birthday, yes there is 17 years between us, our life together had been wonderful and I don’t think I had been that happy for that long ever in my life, yes the odd week, or month here or there, but I had been nothing but happy from the day we became a couple. Even my health had been fine, other than a couple of bad chest infections, I didn’t have any flares and apart from the odd aches and pains I lived with and by then had put down to me being a wimp as the doctors insisted there was nothing wrong with me, life was amazing. I had had no reason to mention any of it to him, it wasn’t hidden just not relevant, there was nothing that we hadn’t talked about and shared. So finding myself with growing problems again was the first time I even mentioned that I had had spells like that throughout my adult life, they were just part of me for some reason. When it didn’t start to go away, I made yet more moves to find out what was happening and this time, I did.
Once the shock had settled and as the grief started to lift, it was replaced with guilt, a guilt so strong and so painful in itself that I sat Adam down and told him that if you wanted to leave me he should. I felt as though I was condemning him to a life that no one of his age should have to be locked into, I felt like I was stealing his life, his youth and his chance to live a happy and normal life. I am sure regardless whatever age our partners are we all go through that guilt of changing their lives, I just had a slight extra layer to it. That guilt doesn’t end once you have talked it through and you have been convinced that they are going nowhere, just as you have to adjust to every new change in your health, you also have a new layer of guilt there as well. The guilt that you can no longer do this or that and your partner has one more thing to do, it’s there every time you see them once more cleaning the house, doing the dishes or whatever it is. It’s even worse when they are cutting your toenails or dying your hair and it just keeps going on and on every single day. I will just say here that it is totally created by me, Adam hasn’t once said anything or even given me the slightest feeling I should feel guilty, in fact, it is quite the opposite, it comes from within myself. Unless you are the most self-centred person on the planet, you will feel it at least from time to time, it’s our personality type that dictates just how much guilt we feel, I am a giver and having to accept that another human is running around after me, doesn’t sit well.
Then there is the guilt that appears every time you realise that you are stopping the person you love from being able to do the things they want. You know all those couple things, like going to the cinema, guilt touches me every time a film opens that I know he would want to see, or out for a meal, or even to works party, they are locked in the house almost as much as you. I would and have never stopped him going anywhere or doing anything, but I know he doesn’t because he doesn’t want to leave me at home. So far I have mentioned the two most obvious guilts, that of being taking away someone else’s life and then of them having to do things for you, but there is an odd guilt, the guilt of getting ill. At this moment in time they don’t know what causes half the conditions I have as they are autoimmune, but clearly, something has to have triggered my immune system into attacking me, although no one knows what that trigger is, I have this odd guilt for doing whatever it was or is. I have pulled my life apart in every direction and I have a theory after theory some seem quite sound, others way off in some mad world of their own. I can’t actually work out why I feel guilty about doing something totally unknown other than to say if I hadn’t done it, then I wouldn’t have anything to be guilty about.
Guilt and illness seem to go hand in hand and it isn’t just me that lives in a strange world of guilt of the unavoidable. I know because Adam and I have talked about it, he too is suffering from guilt, he is guilty is about being able to get out and about, guilty if he spends time with his family and guilty as he thinks he should be doing more than he already does. Just as he has told me to stop being stupid, I have told him, but silently we both still feel guilt about our lives regardless of the logical argument, guilt doesn’t understand logic in any way. Don’t get me wrong it isn’t as though both of us spend every second of our lives feeling guilty about something or other, it is one of those things though that never goes away, no matter how often we have spoken about it or how happy we are in other ways, things pop up and there is the guilt again. I never thought that being ill could do something like this and I can see all too easily how it could get out of hand and it could quite simply ruin someone’s life, not everyone has the strength to be able to put it where it belongs and keep it there, it is another one of those emotions that could pull someone into depression. It is also something that I think belongs on the list of things to watch out for that they don’t tell us about. We all expect to have extreme emotions due to our health at differing times, but guilt is one I have never seen listed, that’s why I chose to write this post. If you right now are feeling guilty about your illness, well you aren’t alone and you aren’t going mad, guilt is something that happens, regardless of the fact we have personally done absolutely nothing wrong.
Please read my blog from 2 years ago today – 7/10/12 – The mark of surviving
This is the third day in a row that I haven’t felt well and in fact, it is the worst yet. I am not inclined to be a person who goes to bed when I am not feeling well but I was fighting it this morning as that is exactly where I want to go right now and ever since I woke up. I don’t think the house being cold is helping but as I said yesterday I can’t really afford to put it on yet, so I just have to put up with…..
I lost my husband Jim 2 years ago. He had Parkinson’s for half his life and was only 64 when he passed. I was 52. We were together almost 30 years and the illness was tolerable until the last
three years of his life and then the tremors became more consistent and the guilt was setting in.
Jim was a painter and a musician so as the tremors progressed these passions became very difficult
as did everything else and daily I could see the pain in his eyes as he needed my assistance more.
I feel for you because it was harder for Jim to bare the guilt of me having to take over everything
than the illness itself. For me though I couldn’t imagine not being there for him and I guess that’s
what unconditional love is. The last year of Jim’s life was unimaginable and it was extremely difficult
for me to to see this cruel disease strip him of everything he loved. The only thing it didn’t take was
the woman who thought the world of him.
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