You feel it, though you know you shouldn’t. In what ways, if any, does guilt come into play in regards to your illness and the way you must live your life? How do you try to overcome feelings of guilt?
I’ve had rheumatoid arthritis for about 23 years. The only time I haven’t felt guilty about my disease was the six-year period when it went into remission and I didn’t experience any symptoms. No pain, no disability, no inexplicable fatigue. No guilt. But the other 17 years, when the disease was active, I did, and still sometimes do.
Why do I feel guilty over a disease I didn’t ask for, did nothing to bring on myself, and certainly didn’t—and don’t—want? Here’s the truth. I’m not guilty about the RA itself. It’s just something I have, like blue eyes, a great imagination, and the occasional ocular migraine (one of which I’m having as I write this). Why should I feel guilty about things like that?
But I do when my disease affects others: my family, my friends and my co-workers.
Like almost all Western women born in the second half of the 20th Century, I was raised to be pleasant, helpful, gentle, kind, honest, generous, unassuming and responsible. As a girl who reached adolescence and womanhood in the Sixties and Seventies, my culture also exposed me to feminism, which made me strive to be strong, proud, independent, hard-working and self-sufficient. I was determined to be all of those things, and until I was 31 years old, that’s exactly what I was.
I am Woman, hear me roar!
Then I got rheumatoid arthritis. Suddenly, while I could still be almost all the things I was raised to be (pleasant, helpful, kind, yadda yadda), I couldn’t always live up to what my culture expected of me. It’s tough to be proud while limping heavily on a severely flared foot. Hard to be independent when you have to ask for help getting dressed because of pain and disability. Sometimes, instead of being hard-working, I had to take unscheduled days off work, or ask others to help me with it. Self-sufficiency became increasingly difficult. Sometimes it seemed like a pipe-dream.
While my RA didn’t disable me continuously—only, say, four days out of seven each week—my reaction to it was guilt. Guilt because the nature of the disease meant that the pain and disability shifted. Sometimes it would attack one hand, sometimes the other. It might be my right knee one day, my left shoulder the next. I might start my day leaning heavily on a cane because of a swollen, incredibly painful great toe, only to end that same day running lightly up the four-story stairwell to my flat, easy as pie when the flare eased, as quickly as it had come on. I felt guilty because my illness changed so frequently, it embarrassed me. It made me feel that others must think I was malingering or attention-seeking. That I was weak. A wuss and a whiner.
I know now, of course, that they probably weren’t. Never once did any of my colleagues or professional acquaintances ever imply such a thing. They were all kind and amazingly understanding.
At home, my family was also mostly understanding. I say “mostly,” because I know that the mercurial nature of the disease frustrated my husband and bewildered my parents. I felt guilty asking him for help with silly things, like cutting up vegetables, opening jars and helping me fasten my bra in the morning. It made me feel weak and sometimes, pretty damned useless. I felt guilty because I couldn’t participate as much as I wanted to in my daughter’s playtimes, or help her practice her soccer kicks and moves. I felt guilty when my husband and I traveled and went sightseeing and I couldn’t walk quickly, or had to stop and rest, or go back to the hotel sooner than we’d planned. And when I got angry having to handle housework like laundry on my own when I was hurting and disabled, I felt guilty for getting angry. After all, my husband was being as helpful and understanding as he could.
To counteract that guilt I pushed myself hard to keep doing everything I needed and wanted to do in spite of the pain, in spite of sometimes being seriously disabled and often exhausted because of it. Looking back, I know I pushed myself too hard. I expected too much of myself, trying to keep up the appearance of normalcy. I cannot tell you the number of times I gritted my teeth while keeping a smile on my face as I shook peoples’ hands, my own hands hurting so badly that even a light touch could increase the pain from awful to excruciating. But shaking hands was a traditional way of greeting others in Germany; people shook hands all the time. To avoid it would be taken as a serious breach of manners. But to explain why I didn’t want to shake hands was embarrassing and often, difficult. My mastery of the language was less than perfect. Okay, it was abysmal. So I shook hands with people, screamed with agony inside, and then felt guilty for wishing I could somehow avoid it.
I also felt guilty when I couldn’t do things I’d arranged to do with friends and family because of RA. I hated having to cancel outings and engagements at the last moment, something that anyone with RA is often forced to do. Once again, though, I was lucky. I was blessed with friends and colleagues who gave me lots of leeway and understanding, and a family who did, too. Plus, I only canceled when I really had to.
Well. That’s a whole lot of guilt for one small woman, isn’t it?
Today, with many, many more years of dealing with RA on a daily basis under my belt, I no longer feel so guilty when it affects my interactions with others. Telling them about my RA doesn’t embarrass me anymore. I don’t mind explaining what the disease is and what it does to me, and if they don’t want to listen, I’ve learned that it’s their problem, not mine. I don’t mind.
These days I don’t feel silly if I have to use a cane, or wear compression gloves, or splints. Instead, I’ve learned to give myself a break. I give myself the same understanding that I hope to receive from others. And I acknowledge everything that I can do in spite of RA, because there’s an awful lot. I go out of my way to give myself pats on the back for doing the best I can—and for recognizing my limits. I admit to being human. I admit that I’m not always the strongest, most independent, most self-sufficient woman in the room, my town, the state or my nation.
To counteract any guilt that worms its way in—and it does, because I’m only human—I just do my best to live my life fully. I do everything I can to treat my disease and minimize the symptoms. I use all the tools I have available to help me live well. If that means strong medications, painkilling narcotic analgesics and canes, crutches, and the like, then I use them. If it means using a special knife to cut vegetables and levers instead of knobs on my doors, fine.
And what about those other qualities, the ones that my parents raised me to have? The kindness, the helpfulness, the gentleness and generosity, the courage to take responsibility for myself and my actions? The care and empathy for others? And the compassion and patience I’ve learned to have in abundance because of my own shortcomings and disabilities?
Well, those I can still do, all the time, no matter how much my RA bungs me up. Sure, sometimes it’s hard. Sometimes I’m not the sweet, loving person I want to be. But that never lasts for long. In the end, I’ll never stop having those qualities or being that kind of person. I’m still strong, still responsible, still proud of being a woman and a human being. Still able to love.
I’ll never feel guilty for that.
Note: I wrote this post for “Patients for a Moment,” a blog carnival being hosted by Rachael, the writer of the excellent blog “Glass of Win” tomorrow, Jan. 12. The subject this go-round is “guilt;” writers were asked to answer the question this post started with. Please be sure to read all of the submissions–this is a subject we can all identify with.
Thank you, you have expressed what I have been trying to come to terms with for quite some time.
Thank you for such a wonderful post. You’ve captured exactly how I feel about this constantly shifting disease – guilty and embarrassed. My elbow hurts in the morning, and my knee hurts in the afternoon. One day I feel as though I could run around the block, and the next I can hardly get out of bed. I always feel people must think I’m making it up, or am just such a wimp that I can’t handle a little discomfort now and then.
Every word of this resonated with me. Thanks for showing me, as you often do, that none of us is alone in this.
Guilt is an easy thing with RA. I can handle a lot despite RA, including holding job, taking of my children, doing advocacy work, and helping my mom but still, I manage to feel guilty despite everything I do and every person that I am there for. As you said, I feel guilty when the disease affects others in my life. I am lucky (knock on wood), however, that I am still very self sufficient despite the pain and I know that others are not or have gone through periods where they weren’t. But the guilt and the anger, I know it. I hate that I am not in control of my body and I hate that I live in a healthy world and as a result, I push myself harder. The attitude you taken is great and I understand that it has taken time and I know that I will get there soon. Perhaps, I am in as much pain as others but I still have not been able to use assistance devices in public – I am afraid to admit that defeat – I suppose. I haven’t yet gotten to the point where I accept that I am entitled to a break but I am getting there. “Still strong, still responsible, still proud of being a woman and a human being,” – Amen, sister!
Wow, you spoke to my heart. It is such a weird feeling to be terrified of handshakes, but there is nothing like a firm handshake on an RA flared hand to drop you to your knees! I lived in Germany for 5 years so I totally get it. I have a hard time with being an RA runner. People do not understand why I can go for a 10 mile run, but can’t take on a stressful volunteer position. The fact that mental/emotional stress flares RA and running subdues it is totally lost on people.
By the way, I finally got the “learn to love running” post up for you!
Are you sure that we are not long lost twins! 😉 When reading your beautifully written post it felt as though you had been in my head, pulled out all my feelings and then expressed them in a way that made perfect sense. Thank you so much for sharing. I too am no longer very embarrassed about my ra, I wish that had always been the case.
You hit something that’s been bothering me a lot this week. In addition to all of your comments I would add that I feel guilty for not “being more of a partner” to my husband. He feels hurt and resentful and I feel like I don’t want anyone touching me and then guilt on top of that. It’s a no-win situation 😦
Thank you so much this post, it’s so true and made me cry whilst reading it.
It’s my life summed up!
Thank you for finding the words to write it.
Hi Wren – I just discovered your blog by way of Helen’s (Pens & Needles) and I just wanted to say thank you for this really insightful post.