What happens when you discover a ‘silver lining’, a source of light within the devastation that debilitating and difficult health brings?
Are you grateful that you’ve found some source of satisfaction? Do you second guess whether you’re as ill as you think? Do you find yourself wondering about your real motivations?
It’s easy to understand how you might get there if you feel grateful that illness provides you with justification to not do something you don’t enjoy doing anyway. Here’s an example of what this looks like. A client told me that she worries because “...illness is letting me off the hook. ” As she tells it, she’s been able to turn over child related activities that are physically taxing (such as watching soccer games) and all household chores to her husband and babysitter. She wouldn’t have done this before she became so depleted and can do so now only because she and her husband agree that without this additional support, she wouldn’t be able to keep up at her job.
The problem for her is that this arrangement actually suits her because she didn’t like doing that stuff anyway. And, that’s the nub of the problem. She feels ashamed because she believes that living with illness should be difficult to bear, not a bonus.
Do you find that sometimes you just can’t give yourself a break? I asked her if she’d have felt guilty 5 years ago when she was still a healthy working mom who didn’t go to her kids’ athletic events or do the meal prep because she needs that time to work? She said yes. Shame has always been her default feeling, particularly when she meets resentment about her choices. But this time, saying it aloud, she had that ‘ah hah’ moment and saw how this thinking gets in her way.
Let’s face it. We bring to the experience of living with difficult health the person we were before we got sick. If you’re fortunate, you have the capacity to use this experience as an opportunity. It opens the possibility to lies develop new muscles that allow you to shut out what others say and listen carefully to the part of you that knows what you can and can’t do. I confess that there have been many times over the past 36 years when I’ve doubted whether I’m as sick as I think or wondered if I could/should push harder to do something that seems out of reach. I can’t imagine how one doesn’t have these thoughts. And they’re an energy suck.
This is not, however, the same as wondering, “Am I lazy and selfish and using illness as an excuse?” Sadly, too often others might suggest that. My experience is that this isn’t the norm.
If you do believe this, however, you might consider this. Rather than continuing to believe that “I feel guilty because illness is letting me you off the hook”, you might consider this challenge: climb down off that hook and develop your capacity to feel comfortable with the choices you make, regardless of your health. No doubt, debilitating health makes it harder to do this because it limits options and leaves you emotionally depleted. All the more reason to put attention on your negative thinking, a place where you can take charge.
Chronic illness is a life changing event that creates a sense of limbo and alienation from those you love most deeply. I’ve seen how it can cast a spotlight on who we are if we’re willing to look. Like any major life event, it offers the opportunity to work on those parts of our selves that are the most difficult to change and most in need. It takes time, patience and lots of support.
Of all the Olympic sports, I most love watching sprinters. But this life, dear reader and fellow traveler, is a marathon. Stop for those water breaks but do keep on running, in whatever way you can.
Alyson says
Rosalind, your blog was perfectly timed for me, as this issue has been eating at me (and fueling the relapse of an eating disorder) so much lately. I can’t work–can’t even force myself to do a crossword puzzle most days–and I feel tremendously guilty. But here’s where I’m different: I’ve had this chronic disease since age 8, and in my earlier years, I was able to push myself to do all sorts of things: piano competitions, graduating from HS and college with honors, doing a high-powered graduate program, working, etc. But then my body just gave out, and now I feel useless. I’m going to keep re-reading your post, though, and try to remind myself that if I am glad I don’t have to work, it’s just because working is so unfathomable to me now. Thank you.
Rosalind says
It sounds like you’ve been throu a lot from a young age. As you know, there is no magic bullet to help us change our thinking. It’s another moving target, just like illness, and the best we can do is to try to adjust our dance steps to whatever shows up. How is today going?
Leigh Peltier says
This is a debate I’ve been having with myself all summer. I don’t have guilt, because I have accomplished alot in the 20 years I’ve been chronically challenged. However, I chastise myself because I know I used to push myself harder. Some days I feel like I’m done pushing, I would like nothing more than to give up. I felt like this through a lot of the summer and then finally I decided that I was in charge and I tell my body what to do and I’m in control of my RA. I’ve also started acupuncture which seems to give slight relief, I’ve relied on pain meds more than in past years, because I’ve needed to and I’m contemplating switching biologics. Which is tumultuous to me. I’ve had such success with mine until this summer and the devil I know is better than one I don’t.
I do recognize how great the past 8 years have been for me. I’ve been able to push and do most things with minimal pain and disruption. So that has helped fuel me through this challenging time.
Alyson says
Thanks, Rosalind. You are right about needing to be flexible in our thinking. Interestingly, I was able to do that pretty well for the first 20+ years of my illness–for example, when arthritic deformities meant I could no longer play the piano, I changed my career goals to teach the academic side of music. I think being creative and flexible was easier when I felt like I still had worthwhile options that I could pursue in my life. But for now, I need to accept that severe fatigue is the new (nor not-so-new) normal for my life. I’ve written “You really are doing the best you can. Don’t doubt yourself,” on a piece of paper now affixed to my computer monitor, to try to get me to lay off the guilt trips. Thanks again for addressing this issue.
Isabel THORNE says
Your blog is also most timely for me as I too feel guilty and ashamed for not being as ‘productive’ as I used to – and by that I don’t mean just work.
Each year I find myself reviewing and adjusting to living with an evolving condition, but as I let one ‘activity’ go, I find that I take a further step into a more contemplative way of being. This is really good for me and I know that I need it, but that doesn’t make it any easier – certainly not in terms of trying to let go of the feelings of guilt I have..”no I shouldn’t be enjoying this way of being..” “no I shouldn’t be enjoying this stillness or the opportunity to gently meditate whilst knitting or making a rag rug”…”I should be out there….doing……”. Well the irony is plain to see.
So thank you for your blog – its incredibly reassuring to know that other people feel like me.
Rosalind says
Alyson, I see you’re trying to work within the parameters of who you are and what you think will make a difference How do you find it’s going? Rosalind
Rosalind says
Isabel, I’m delighted to hear that this resonates with you. So, what can you do to remind yourself when you find yourself with that response? You might ask what about remembering that others experience this makes a difference for me and play with that. Rosalind
Danny van Leeuwen says
I have the opposite problem. I’m pathologically optimistic. I get quickly bored with feeling sorry for myself. I only fret and worried during the night. Insomnia was my buddy. A dear friend shook me up a few years. She said, “OK, now bitch for 5 minutes. I can take it.” It was wonderful. I whined, I cried, I blubbered. Then I got tired of it. Now I do it regularly – part of my meditation when it comes up. I’m sleeping better, too.
Alyson says
Rosalind, I think that, the more I can tell myself that this is just the way I am now, and it’s not something to feel guilty about, I can find more peace. I know that, like Danny, I’m eternally optimistic, and will never stop trying to improve my life and especially better myself as a person. I’m trying to see that doing that, within the parameters of what my situation now is, is a challenge. It’s not something that must make me feel bad about myself.
Isabel, I, too, have found that not being able to push myself as hard as I used to in order to be productive has made me more contemplative and better able to appreciate and value qualities in others that don’t have to do with traditional definitions of “successful” and “productive.” I think it’s wonderful that you’re taking more time to meditate, knit (I crochet, though it can be hard on my hands), and enjoy stillness. I think it’s good to remember that there are many “non-physically-challenged” people who try very hard (and spend much money in the effort) to become more meditative and contemplative. If we can become that through the (albeit difficult) adjustments our illnesses demand, then hooray for us!
Rosalind says
Danny- I love hearing how each of us finds our own way to create some equilibrium. Thanks for sharing.
Rosalind says
Alyson– YES! I agree. Hooray for those of us who are trying and for those moments when we succeed!