Thoughts on Guilt and Rheumatoid Arthritis
Guilt and rheumatoid arthritis (RA) go hand-in-hand. It goes something like this: You made plans. Sometimes big plans, sometimes small. Then you wake up to a day when your RA has decided to be extra — extra painful, extra flare-y, extra getting in the way of your life — and there’s only one thing to do: cancel. And the act of making that call or writing that text to cancel brings you to your knees with guilt.
I’ve been there, more times than I can remember. It ranges from the small wince of asking to reschedule something to a better day or delay a deadline. There is the more intense feeling of twisting myself into a pretzel — quite literally a coiling, braiding sensation of twisting inside my body — when I have to cancel plans with someone I care about. And then there is the heart-wrenching desperation of having to bow out of something big. Like the time I had to tell a dear friend I couldn’t be part of her wedding party. Couldn’t even attend on her big day. It took me a long time to face that and the call when I told her was devastating.
I cried for a very long time that day.
I know I’m not alone in having railed and wept and been consumed by the guilt. Guilt over not being able to meet expectations, being unable to participate or honour your obligations, or simply be there in the lives of those we love. I see it all the time when I talk to people in our community — it is a recurring topic of conversation, of writing, something with which we all do internal battle.
Because I am prone to overthinking, I did some of that and discovered that maybe guilt is the wrong word for what’s going on.
What is guilt?
Guilt is the feeling that happens when we do something wrong. It is appropriate in the context of actions that are against our personal code of ethics, as well as those that are against the law. The dictionary defines the feeling of guilt as “a feeling of responsibility or remorse for some offense, crime, wrong, etc., whether real or imagined.”
This is where it gets a bit revolutionary. Because if you look at it through that lens, having to say, cancel dinner with a friend because your chronic illness got in the way, is not wrong. You took no action — other than making the call to cancel — that was based in avarice or another selfish motivation that prompted a wrong choice. Something else, your RA, took away that choice from you.
Sure, you did have to call it, did have to engage in a complex calculation of energy expenditure, available remedies for consequences, and impact of those consequences on your ability to do other things for the next several days. But was it wrong with a capital W? Is it an offence or a crime?
I’m pretty sure you’re not going to be surprised when I share my opinion that it isn’t. So, what is it instead?
Name it and be free
Our culture is shaped by Judeo-Christian tenets and guilt is big in that tradition. There’s a lot of focus on sinning, doing wrong, following commandments, and more. Even if you are not a person of faith, the undercurrent in our culture can’t help but shape how you think and feel. So we call it guilt.
It isn’t guilt. I believe it is something else altogether and it starts with anger, first. Anger at the things you can no longer do, anger at the illness that necessitates you acting in ways you don’t want or which are against what you believe (such as not cancelling dinner with a friend, never mind the reason). At the RA that has swooped in, hijacked your body and your life and your will.
And then underneath the anger, it is grief. The grief that accompanies any diagnosis of chronic illness, the loss of who you were and what you used to do. The continuing and repeated grief you experience every time the illness interferes with your ability to live your life and be the person you want to be. Even when you have reached a level of acceptance that this is who you are now and this is what your life is, the next time RA sneaks in to erode yet another moment, occasion, ability, the grief happens all over again.
Acknowledging this kind of grief is hard, but it can help you in those moments in which you previously felt guilt. Instead of twisting yourself into a pretzel, instead of berating yourself, own it. Share the feeling, letting people know that you were really sad you have to cancel dinner, can’t say yes to an invitation, can’t do someone a favour. Instead of apologizing to the point of groveling (I can’t the only one who has felt that way?), talk about the sadness. Name it, acknowledge it, process it. Cry about it, if you need.
You can leave it there, named and present. But you can also use it to open up a conversation with this someone you care about who may also feel sad when the RA takes you away from them. And in so doing, instead of being lonely in the pain, you will each have companionship in it.
And there lies the beginning of healing, together.
Tag: .disability, chronic illness, family, friends, guilt, mental health, relationships, rheumatoid arthritis
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I suggest that it may not be guilt but grief that guides us more. I understand your proposition about anger, but even anger can be the result of grief. For instance if I am grieving my loss of independence then of course I am angry.
Lene, yes, I’ve been there and worn that t shirt. It’s such a horrible feeling when we can’t do something because of our pain. We get sad and feel guilty, but I think you’re right – it’s not actually guilt. And after all, we’ve done nothing wrong. Anger, grief and also frustration get the better of us and we call it guilt.
There is only so much you can do and people should understand the situation. You aren’t canceling plans because you want to, instead because you have to. I wouldn’t classify it as guilt because you haven’t done anything wrong to be guilty of. I think it’s OK to be angry while allowing some perspective on the overall situation. My wife will always remind me that “it could be worse” and I hate to admit that most times she is right.
Rheumatoid arthritis is such a horrible condition and it’s understandable that sometimes you need to cancel plans and rest your body. I don’t think you need to feel guilty for that.
Chronic illness can be so hard on you and your loved ones. Love that you said to own it and share your feelings to your loved ones so they can heal with you as well.
Kileen
cute & little
We put a lot of pressure on ourselves and sometimes we forget that in certain situations we don’t need an excuse, we don’t need to feel bad for making the choices we essentially have to make for our well-being. You shouldn’t feel guilty, and like you said, maybe that feeling is not guilt but anger, disappointment, and sadness for needing to postpone or cancel things that in reality you want to do!
I think this is a very healthy and compassionate perspective to have. Part of being able to recognize that the guilt is really coming from grief is turning that compassion towards yourself.
I think it honest and proper to act as you do. it is not your fault but it’s hard to keep it out from you. reading this post makes me want to hug you so much!
This is such an important conversation to have, thank you for shedding light on it. I think anyone with an ongoing illness, physical or mental, struggles with this type of guilt. It’s important to remember that we are, at the end of the day, all human and we have our limits. Furthermore, those that love us, the friends and family that we have to cancel plans with from time to time, honestly want the best for us! Otherwise they woudln’t be real friends. For thatreason, they wouldn’t want us in severe pain pushing through out of feelings of guilt on the bad days – they’d rather see us take care of ourselves.
Beautifully put. I wonder sometimes if it’s easier to feel guilt than grief, because it maintains the illusion of control (if it’s my fault I had to cancel, it suggests that I could have chosen to do otherwise; grief acknowledges that, at that moment, my illness was bigger than my capacity to keep going through it). I have been working lately to be OK with feeling grief over where I am (and where I am not). The silver lining is, once I do that, it’s easier to see the things I have and can do that don’t make me feel grief!
As someone who has seen the effect of rheumatic arthritis in my family, it is so much easier to understand your perspective on guilt. But then being human not every thought is initially in our control. Love the way you deal with it.
Rheumatic arthritis should not be taken lightly and you also shouldn’t feel guilty about it. Thanks for opening up to us and proud of how you handled it.
Thanks for sharing your thoughts and feelings, I find it easier to empathize and be more understanding towards others when I read posts like this. Try not to beat yourself up for cancelling plans if you genuinely need the rest, good friends will understand.
But please do not be guilty! Do as much as you are able to do. This grief can make your metal health turn sour. Keep positive. Rheumatoid arthritis sucks! I learned a long time ago that weight loss is very important. If you are overweight, the extra pounds add stress to your joints.
“Our culture is shaped by Judeo-Christian tenants and guilt is big in that tradition. There’s a lot of focus on sinning, doing wrong, following commandments, and more. Even if you are not a person of faith, the undercurrent in our culture can’t help but shape how you think and feel. So we call it guilt.” nailed it right there! This is one aspect of my life I’ve worked VERY hard to change the last 5-7 years! Just do you and don’t worry about everyone else! Great read!
I am sure those around you completely understand your situation, although some events may be harder to cancel plans for or reschedule I am sure those you love wouldn’t want you to attend if it meant being in more pain. I can understand where the guilt comes from as well.