I touched on this issue in my last post in this series, which was about pain. In that I talked about how difficult it is for other people to see you in pain and how, effectively, your pain affects them too. Trouble is, that extends well beyond pain.
Some of the ways your illness affects others are obvious. I used to live with a Type 1 diabetic, and my kitchen cupboards were full of diabetic friendly food like whole grain pasta, brown rice and Splenda, and it was rare that I ever baked anythingfun not diabetic friendly. When he left, those items quickly left my cupboards. Especially the brown rice, which I think is truly foul. And it doesn’t matter if whole grain is healthier than white, for a Crohnie, it is most definitely the other way around and frankly, brown rice just tastes awful.
Some of those ways are not so obvious. While doing a “first-trip-to-the-supermarket-after-moving-in-together” shop with an ex, I threw not one, not two, not three, but four packs of Always sanitary pads into the trolley. “Are those on offer?”, he asked. “I wish”, I said, “that won’t last the week”. The look on his face was priceless. The look on my face said, “Welcome to my life, mate!” In hindsight, I find this story pretty funny, but if you looked at the price on the till receipt, and know that you have to plunk that out every single month, you would know that there wasn’t really anything funny about it.
Other things are anything but funny. I never bought bed sheets in colours other than black or navy blue, and under the dust-resistant mattress protector, you will find the remnants of a pretty impressive stain from my pre-hysterectomy life. Bad enough when that happens in your own bed. Mortifying when it happens in someone else’s. And there was nothing funny about me being in so much pain that I could not get off the bed without help to go to the toilet, never mind to change those sheets.
But worse than that is when the strain of supporting and taking care of you begins to wear another person down.
Although there are practical things people can do to help someone with a chronic health issue, ultimately, they can’t fix it, and that makes them feel helpless, which leads to feelings of self-loathing. And they worry about you, and that turns from worry into full-blown anxiety. And sometimes that worry turns into outright fear and panic. And those things together turn into anger, resentment and eventually, depression. And you, as the person who is being cared for knows this, and feels horribly guilty for causing someone else so much distress.
I’ve not only been the patient in this dynamic, but also the carer. In fact, I’ve pretty much spent my whole life as a carer, even as a very young person. That’s nobody’s fault, life just happened that way. And that did impact me, and that experience has very much formed who I am today. I learned a long time ago how to deal not only with the practical side of caregiving, but also how to deal with the emotional strain and uncertainty of long term health issues. As it is so much of my “normal”, I often forget that not everyone has that experience and coping strategies behind them. It’s a lot harder for who have never done it before, especially when they aren’t well themselves.
Despite this experience, I don’t think that I’m full of any great wisdom about how to cope with caring for someone. Ultimately, everyone is different and you need to find out what works for you. But what I will say is that self-care is extremely important. If you don’t take care of you, you can’t take care of anyone else. And it’s okay to feel overwhelmed. That doesn’t make you weak, or incapable, or a less caring person. It makes you human. And when you feel overwhelmed, you need to talk to someone about it. If you don’t, you’ll implode. And that can be pretty messy.
Some of the ways your illness affects others are obvious. I used to live with a Type 1 diabetic, and my kitchen cupboards were full of diabetic friendly food like whole grain pasta, brown rice and Splenda, and it was rare that I ever baked anything
Some of those ways are not so obvious. While doing a “first-trip-to-the-supermarket-after-moving-in-together” shop with an ex, I threw not one, not two, not three, but four packs of Always sanitary pads into the trolley. “Are those on offer?”, he asked. “I wish”, I said, “that won’t last the week”. The look on his face was priceless. The look on my face said, “Welcome to my life, mate!” In hindsight, I find this story pretty funny, but if you looked at the price on the till receipt, and know that you have to plunk that out every single month, you would know that there wasn’t really anything funny about it.
Other things are anything but funny. I never bought bed sheets in colours other than black or navy blue, and under the dust-resistant mattress protector, you will find the remnants of a pretty impressive stain from my pre-hysterectomy life. Bad enough when that happens in your own bed. Mortifying when it happens in someone else’s. And there was nothing funny about me being in so much pain that I could not get off the bed without help to go to the toilet, never mind to change those sheets.
But worse than that is when the strain of supporting and taking care of you begins to wear another person down.
Although there are practical things people can do to help someone with a chronic health issue, ultimately, they can’t fix it, and that makes them feel helpless, which leads to feelings of self-loathing. And they worry about you, and that turns from worry into full-blown anxiety. And sometimes that worry turns into outright fear and panic. And those things together turn into anger, resentment and eventually, depression. And you, as the person who is being cared for knows this, and feels horribly guilty for causing someone else so much distress.
I’ve not only been the patient in this dynamic, but also the carer. In fact, I’ve pretty much spent my whole life as a carer, even as a very young person. That’s nobody’s fault, life just happened that way. And that did impact me, and that experience has very much formed who I am today. I learned a long time ago how to deal not only with the practical side of caregiving, but also how to deal with the emotional strain and uncertainty of long term health issues. As it is so much of my “normal”, I often forget that not everyone has that experience and coping strategies behind them. It’s a lot harder for who have never done it before, especially when they aren’t well themselves.
Despite this experience, I don’t think that I’m full of any great wisdom about how to cope with caring for someone. Ultimately, everyone is different and you need to find out what works for you. But what I will say is that self-care is extremely important. If you don’t take care of you, you can’t take care of anyone else. And it’s okay to feel overwhelmed. That doesn’t make you weak, or incapable, or a less caring person. It makes you human. And when you feel overwhelmed, you need to talk to someone about it. If you don’t, you’ll implode. And that can be pretty messy.
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