Guilt. It’s a horrendous emotion. Anyone who has ever laboured like Atlas under this monumental burden knows that it can drain the life’s blood out of even the most stoic. However, guilt seems to have a particular penchant for chronic illness. It’s like it gets an all-you-can-eat-buffet feeding from the insecurities that plague our medical tumults. What do I feel guilty about? Let me count the ways…
Financial/ work guilt:
I had a severe case of this this week and it completely knocked me sideways. It started one morning when my fiancé came downstairs suited and booted preparing for a big meeting he had in London. He’d been up until ungodly hours the night before doing paperwork and was stressed. I hate it when loved ones are stressed because I immediately want to do something to ease their worries. Now, stress is a funny thing in a romantic relationship. The way I see it, if a partner is stressed, you have two options (well, three if you choose to completely ignore them). You can a) Remove some of the stress by taking on other jobs—cooking, cleaning, bonsai tree care etc.—thus easing the pressure on your other half’s furrowed brow, or you can b) share and empathise with the stress because you’re equally as burnt out running a multi-million pound conglomerate and you can bond over the hardships of commerce.
My problem over the last couple of weeks is that I could do neither of those things. I haven’t been able to go to work because a particularly nasty flare has been royally kicking my arse and I simply felt too ill. What I wanted to say was “Ah babe, I’m so sorry you’re stressed. I completely know how you feel as I’ve had a horrendous day too: Mr Rogers got a spontaneous erection whilst I was washing him and then proceeded to throw up all over Mr Stevens in the next bed. How about I do dinner tonight and you can do it tomorrow night?” But I couldn’t regale him with tales of vomiting patients or paperwork that would never cease, and I couldn’t take on more around the house because I could barely function. In fact, all I felt able to do is sit down and rest. But if that’s all I could do, what’s my role in this relationship? What am I contributing? In my head, this was what I must have looked like:
Whilst my fiancé looked like this:
It’s not a great picture is it? I decided not to lay down and rest. Instead, I struggled on, slowly making dinner with spontaneous grunts of ‘ouch’ and ‘ooh’ closely resembling a female tennis player. I thought this might be helpful, but this just seemed to irritate him more and I got the familiar fix-it Fred shout from the other room: “Just leave it and I’ll come and do it in a minute! Just sit down!” Brilliant. So, I come and sit down whilst he manically finishes his work and then struggles to do dinner, waiting on me like some kind of contorted version of Thunderbird’s Lady Penelope? That to me just seems like an invitation for an entire shit blizzard of guilt, and, at that moment, I didn’t think I could cope with that. I couldn’t leave him to struggle with the financial burden of running the house (because, let’s face it, even if I was at work I don’t make as much money as him because I can’t hold down a full-time, well-paid job because my body hates me) and do the domestic chores and leave him to run his own business. That’s just a one-way ticket to Low Self-Esteemville.
When the balance of our relationship shifts in this way, I don’t even feel like I can tell him that I’m tired. Even though I’m thoroughly exhausted, my brain still rationalises that I can’t be as tired as him. After all, what have I done all day? I walked the dog. I tidied. I showered. And even though I know that there’s a reason why one of the most famous Memes circulating the internet is “You don’t know what fatigue is until you’ve had to rest after having a shower” how can I voice this to him? “Oh yes darling, I’m sure you’re exhausted after driving to Southampton all week whilst running your own business, but I’ve showered today!” Even writing this sentence seems ridiculous. I feel like I need a justifiable reason to be tired. Like if I had been at work all day I’d be perfectly ok to say that I was tired. Everyone understands work tiredness. It’s socially acceptable. The tiredness that comes from fighting an invisible internal battle is less acceptable.
I know this is an issue that many of us struggle with. I know that this is one of the areas that I can’t cope with when I’m flaring. I hate feeling like a useless burden. Underneath all of this is a need to explain and rationalise my fatigue. Like I have to compete. Don’t get me wrong, my fiancé never asks me to go above and beyond to prove myself. He never doubts my struggles. But, somehow, this just makes it worse. I want to help; I want to contribute to our relationship like ‘normal’ people do. But isn’t this the issue? I’m not normal (I’ll pause for laughter from family and friends here). I’m not being self-deprecating, but the fact remains that I have different limitations to my fiancé because I’m not healthy. I can’t push myself to the limit and then come home and dash away with a smoothing iron. When I’m having a good day, I’m pretty good at recognising those limitations and, unless I’m being particularly stubborn, I normally adhere to them. But on a bad day…
During my time in counselling, this issue of normality came up a lot. It was a word that always used to pop up if I was having a bad time or a particularly awful flare. We would discuss my longing to be normal and I would come up with a list of qualities that ALL ‘normal’ (i.e. not sick) people have. By the end of the list, I had turned the majority of the population into superheroes, able to do anything and everything. This was what I should be doing. Everyone else manages to work, maintain a relationship, exercise, raise children, have well-behaved pets and a vibrant and exciting social life. And they do ALL of these things ALL of the time. They don’t struggle or complain. And then my counsellor would ask me how many people I knew fitted this description. “All of them!” I would reply. She’d look at my quizzically and I’d laugh. Because, realistically, I didn’t know anyone that didn’t struggle, irrespective of whether they were healthy or not. So why, when we’re flaring, do we think that everyone in the world is managing perfectly whilst we’re sitting in a puddle of our own juices feeling exhausted at the idea of getting a drink of water?
I think it comes back to the notion of grieving for our pre-illness self, and only being able to see the limitations and restrictions of our current lives. We forget to see any positives because, in our head, there aren’t any. I think this is where the notion of self-care comes in. The question that I was constantly told to ask myself in counselling is “What do you
need?” If I look back at the relationship scenario at the beginning of this segment, I feel like I may have left an option out. What I needed was to rest. To lay down and sleep. So how could I have done that whilst still maintaining a relationship? Perhaps the notion of communication is about to raise its ugly head again. Couldn’t I have told him that I was sorry he was stressed, that I was grateful for what he did and that I was always here to listen to him? Couldn’t I have said that I didn’t have the energy to cook dinner but that there was a pizza in the fridge that I could put on for him before I went to bed? Would it have been so hard to explain my feelings without the need to compete in the ‘Who’s more tired’ Olympics?
I spoke to a fellow chronic illness sufferer about this and she told me several strategies that she uses with her husband to overcome these situations. When she was having an ok day, she sat down with her husband to explain to him how it felt when she was poorly. She told him all about what she could and couldn’t do, and what he could do to help in those situations. When she was poorly, they didn’t need to have a conversation about it. He knew what she was going through, and he knew exactly what to do. It got me thinking, so I’ve compiled a list of suggested strategies that might help if you find yourself in this situation:
- Keep a couple of basic, chuck-in-the-oven meals in the freezer to use when you’re flaring. That way, you don’t even have to think about cooking when your body is on strike
- Talk to your partner about how you feel when you’re flaring but do it when you’re feeling well and he/she is receptive. Make a list of what he/she can do to help you. Leave it somewhere that’s accessible
- Have a non-verbal way of explaining how you’re feeling if you’re really struggling. This might include post-its, a text, a thumbs-down emoji or maybe a fridge magnet. There’s nothing worse than trying to articulate feelings when you feel like shit.
- Remember that being in a partnership is as much about emotional support as it is about doing things. If your partner is struggling but you’re not able to do anything, give them a cuddle or send them a text (even if you’re in the same room). Let them know you’re still there for them.
- Take care of yourself. You can’t fight a flare up so take stock of what you need and do it. You’d be amazed at how much quicker you bounce back if you take some time for self-care.
This won’t be my last post on guilt. It’s a right little bastard that features in so many aspects of life with chronic illness. However, if you take one thing away from this post, please be reassured that feeling guilty is COMPLETELY NORMAL. Give yourself some compassion, rest and then bounce back to be the bloody awesome person you are.