I’ve talked a lot about the guilt that comes with having a chronic illness – guilt that I’m not able to do some things with my kids, guilt that my husband and kids have to pick up the slack for me around the house, guilt that I can’t volunteer and help others like I would like, guilt that I’m not doing as much and succeeding as much in my career with all the support and effort from others up to this point, guilt if I choose to do something for myself knowing that it means I won’t have energy for something else, and so on.
It’s common with “spoonies” – people with invisible chronic illness that is often accompanied by pain and fatigue. We can’t do all that we formally did. We can’t do all we’d like to do.
Yes, everyone must make choices and everyone feels guilt over things things they can’t do – but it’s a little different with chronic illness. I’m not doing things that I know I would be able to do if I didn’t have this disease and these symptoms. They are things I used to do, things I know I would have time and energy for if not for being sick. I can much more easily brush off guilt associated with things that I know I would never have been able to do anyway. I think it’s the loss of things that you used to be able to do that creates the special guilt for chronic illness patients.
I know the guilt and the stress it creates is not good for me and likely exacerbates my symptoms so I’ve been trying to figure out how to let go of the guilt. I think I’ve found a way that works for me (and my thinking that tends to be analytical in nature).
Each time I begin to feel guilty about something that I am not able to do or some burden that I’m causing on others I will:
1. Remind myself that I did not ask for this disease, it is not of my own doing, it is not in my head, it is not an insignificant disease. It is very much real and impactful. This isn’t about taking on a “victim” mentality – it’s not something that was “done to me” nor is it something that I ever really think “why me?” about. This is simply a reminder that I am not the cause of my situation and limitations and therefore I should not feel guilty because of it.
2. Ask myself if I am making realistic decisions based on my current limitations. If I am not exaggerating my pain and fatigue, if I am not “milking it” then I should not feel guilty for making decisions based on physical limitations.
and 3. Ask myself the reason that I’m choosing to do/not do something.
Sometimes I feel guilt because I chose to do something for myself rather than save those “spoons” for another task. If this is the case, is it an appropriate and/or necessary self-care activity – I realize that I do need to care for myself mentally and physically or I won’t be able to do much of anything at all.
Sometimes I feel guilt for not doing one thing because I need to save “spoons” for something else. Am I choosing to not do laundry because I need those spoons to be able to go to a family gathering later that day?
My list of priorities when it comes to spending spoons are my immediate family (my children, myself and my husband), other family, and friends. As long as I’m making choices about using spoons based on these priorities then I should not feel guilty for it.
Unfortunately, even though work is not in that priority list it does sometimes take precedence over something else. For example – I have to work in order to help pay the bills and provide necessities (and some wants!) for myself and my family. So sometimes I use all my spoons for work and then have nothing left when I get home for my family or myself. That seems like it’s not following my priority list – except that the reason I work is to provide for my family. So basically work is a priority for spoon usage only in that it has to be done to get a paycheck to support my family.
Even with this priority list I must still remember #1 and #2 above. Of course I want to give my children everything I possible can – all my time, energy, love, affection, presence, making memories, etc. However, based on #1 and #2 above I will not be able to do everything that I would have been able to do had I not been sick. So even though they may be a top priority I still must be realistic in my expectations for myself based on my physical limitations and the emotional impact they take on me.
So even within the priority list that holds my immediate family in the top slot there are priorities ranking within the priority ranking. Is it important that I go to every single baseball practice to show I’m involved and engaged with my son or is it important that I participate in whatever way I can with his love of baseball (such as keeping track of the accounts and paperwork and ordering uniforms)? I’d love to do both – I love to watch him and his friends play, even at practice. However the later takes much less time and energy (fewer “spoons”) than the former and still allows me to show my son that I am involved in something he cares a lot about.
If I have reminded myself that this disease is not my fault and that it is real and creates real physical limitations, ensured that I’m making realistic decisions based on those physical limitations, been honest with myself about the reasons I’m choosing to spend my spoons in the way I’m choosing and found that those reasons are in line with my priorities then I have nothing to feel guilty about.
I can feel sorry that I missed something I wanted to go to. I can feel sorry that my husband has to do more laundry than he probably should. That’s sorry as in sympathy, compassion, regret.
The definition for guilt includes “a feeling of having done wrong or failed an obligation.”
I think the first part of this definition is easy to handle: although I can be sorry about these things, I should not feel guilty about it. I’m being realistic and making choices based on my reasonable priorities. I have done nothing wrong. There’s no guilt in that.
It’s the second part of the definition that has the bite – feeling as though I’ve failed an obligation. I may feel like I’ve failed my obligation as a parent, wife, friend, worker, etc.
If a person in a wheelchair didn’t put up the clean dishes because they couldn’t reach the high shelves would I think they had “failed an obligation” to do their part? No – not at all.
I think this is that part that is so hard for spoonies – accepting that we are physically limited (whether by pain, fatigue or both) compared to what we were able to do before and if those physical limitations prevent us from doing something and we’ve been realistic and made choices based on reasonable priorities then we could not have been found to “fail an obligation” any more than the wheel-chair bound person that couldn’t reach the top shelf.
I’m not there yet – but this is helping me get there. Hopefully with practice I’ll be able to lose those little knots of guilt I feel over how this disease is impacting the lives of those around me.