Managing Your Fibro Guilt
I often think a fibromyalgia sufferer is a bit like a juggler at the circus. We stand up and smile at the world trying to make everything look easy, but inside we’re desperately trying to make sure none of the balls hit us in the face.
We’re constantly catching balls of pain or fatigue or anxiety, and no sooner have we caught one ball than another one comes hurtling our way. Today I want to talk about one of the balls we don’t give a lot of attention to — fibro guilt.
Fibro guilt is that awful feeling in the pit of your stomach, the guilt of knowing just how much your condition is impacting those around you and not being able to do anything about it. It’s the feeling of not asking for help because you feel like such a burden, but knowing you have to ask for help because you don’t have any other choice.
So what can we do about it?
Help Yourself
It’s difficult to help someone when they won’t help themselves, so it’s really important that you are the best patient you can be.
Last week my partner was ill with the flu. I asked him what he wanted for dinner and he shrugged and muttered, “I don’t know." I told him I was worried about him and that he had to eat something, and I suggested four or five different meals. To each one he responded with the same exhausted “I don’t know."
Sometimes a feeble “I don’t know" is all we can muster. We don’t have the energy to even think about dinner, but what he didn’t realize was that with every “I don’t know" that came out of his mouth I became more and more frustrated. I felt useless; all I wanted to do was make him feel better and he wouldn’t help me.
The thing is, I’m just as bad a patient. When my fibromyalgia flares up my partner won’t let me carry anything. When we go to the supermarket we pack the bags at the till, then he picks them all up and, like a pack mule, walks out of the store.
If I try and take one of the bags from him — even if I go for the light one with toilet paper and sponges in it — he gets very annoyed with me. Apparently I’m supposed to be resting. I always feel guilty after these moments. He’s just trying to look after me and I’m making it more difficult that it needs to be.
As the patient, it’s important to remember that you’re not the only one who’s exhausted. By being a good patient and helping yourself, you are also helping the person who is trying to help you.
This is a partnership; the people who love you want to help you. If you do your bit to let them help, then they feel happier. And, let’s be honest, if the person helping you is happy in doing so, then there is nothing for you to feel guilty about.
Be the Carer and the Cared For
It’s so difficult to look after others when you need someone to look after you, but it’s really important that care isn’t just one way.
Sometimes we start to feel guilty because our friends and family do all these big things for us like carrying the shopping or picking up the kids or vacuuming the house, and we can’t do any of those things in return.
But it's important to remember that there are hundreds of things we can do to care for those around us.
For example, the easiest way to care for someone else is to simply pay attention to them. Ask your friends how they are because, sure, they don’t have a chronic illness, but they’re still going through life’s day-to-day troubles, and sometimes the focus needs to be on them.
Once I asked my friend how she was doing; she looked tired and sounded irritable, and she told me that she’d had a sore back for almost a week. I smiled and said, “Welcome to my world!" It was a joke, but I instantly felt guilty. This conversation wasn’t meant to be about my pain, it was meant to be about hers.
It’s important that we don’t become consumed by our pain. As long as our friends still feel like they can come to us for help, we can feel less guilty because the care in our relationship is two-way.
Talk About It
It’s really important the people around you know that you want to do things for yourself, it’s just that you can’t.
It’s completely natural to feel guilty about sitting on the sofa while your family members do all the chores, but it’s not like you have many other options.
It’s important that you talk about your guilt and your pain. I’m not suggesting that your partner does the dishes as you whine about your neck pain, but you need to acknowledge that you want to help and you’re sorry that you can’t.
I’m not for a moment implying that you apologize for your health — that’s not something you have control over — but you can be sorry that you can’t help out more.
As long as the people around you know that you don’t take them for granted, you can feel a little bit less guilty. They know you appreciate them and that’s what matters.
Accept It and Move On
There are times when the feeling of guilt is inevitable and there is nothing you can do but accept it. Last week I had to take a day off work; my pain was particularly bad and I think pre-Christmas stress probably meant I was doing too much and not looking after myself.
I took the day off and cancelled a meeting, but as soon as I did it I felt guilty. I worried I had let my team down and that I wasn’t doing a good job at work. My fibromyalgia had yet again had an impact on those around me.
But, it is what it is. We can’t do all the things we want to do and more often than not we have to change or cancel plans because everything is just a little bit more difficult than we thought it would be.
You can worry and feel guilty all you like, but you are unwell and you can’t help it, so just do the best you can and move on. Let those around you help out, and just say thank you.
Determine Your Strengths
Fibromyalgia patients are rarely physically strong, but that doesn’t mean that we are weak. There are plenty of things we are good at and focusing on our strengths helps us to feel less guilty.
Okay, maybe you can’t do the chores or go out shopping with the girls, but let’s think about what you can do. I recommend getting a piece of paper and splitting it into two columns; write a list of all the things you’re good at in one column and a list of all the things you enjoy in the other.
Next, match the two together. There will be things that you enjoy and are more than capable of doing which even the most healthy, strong person can’t cope with.
For example, one of my skills is in planning and organization. I enjoy making plans and I am good at turning those plans into a reality. I spend every waking moment with my diary and notebook, and if there is something to be arranged I want to be the one arranging it! (I know, I’m that person who spontaneous free-spirits despise!)
I use these skills and interests to help out my friends, such as planning bachelorette parties and arranging work events. I feel less guilty lying in my bed when I know I’ve spent the day on my laptop and my phone to organize something that helps out a friend.
I have a feeling that guilt will always be one of the fibro balls we have to juggle, but by taking control of your guilt and helping those around you, you're less likely to get hit in the face with it. Or something like that.