Guilt.
How appropriate I am thinking about the prompt for the next edition of Patients for a Moment tonight, the night before my full-time academic schedule begins. (I’ve been part-time for weeks but that doesn’t make tomorrow feel any less significant.)
But that’s a whole different working mother post.
Guilt is one of the predominant emotions that accompany chronic illness. Certainly it waxes and wanes but it is inescapable. In my experience, it’s the ways in which illness impacts those around me that is the cause of much of my guilt, and from the patients I spoke to when I wrote Life Disrupted and the conversations we’ve had on this blog, I think that’s pretty universal.
There’s the guilt I feel when I have to cancel on friends yet again, or cannot be there for them when I’d like to, or need to rely on them for more help than I’d like. There’s the guilt during periods of particularly serious illness when it feels like things are so one-sided, and I am taking a lot and do not have a lot left to give.
I’ve written a lot about the guilt involved in marriages with chronic illness, and the toll invisible illnesses take on those who live with us and care for us. I am so grateful for all the ways in which my husbands supports me (physically, emotionally, etc) and all the compromises and accommodations he has made over the years because of my illnesses, but of course I wish he did not have to do those things.
When I was pregnant, I wrote about the anxiety that comes with a high-risk pregnancy, and the preemptive guilt I felt when I worried that something going on with my body would somehow harm my baby. Every non-stress test, every biophysical profile, every appointment and blood test and hospitalization was tinged with that, and literally not a day goes by where I am not grateful that she is here, and she is safe and happy.
But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.
I am sure the older she gets the greater the stakes will be, and the things I might have to miss or might not be able to do are things she will notice even more. But I can’t worry about that now; that is not productive for me and it doesn’t do her any good. All I can do is give her my best on my good days and especially on the more difficult ones.
The closer we are to people and the more they mean to us, the more they shoulder when it comes to illness; the more our bodies’ idiosyncrasies and problems become theirs. It is so easy to let guilt over illness consume us or overly define relationships and attitudes, but my health issues are but one part of me. Therefore, they are only a piece of the relationship I have with my daughter, with my husband, with my friends and family. If I remember that and keep things in perspective then that’s all the better for her.
(It only were it as easy as that, huh?)
Oh, Laurie, I know just what you mean! I often feel so conflicted when I’m doing my vest and nebulizer treatments and my son wants/needs me. There are some days when I am so tempted to skip them, but then I remind myself that, in the long run, it’s more important for him to have a healthy mama to take care of him than to have his needs/desires met every second.
Also, it gets better as they get older. My son has gotten used to my treatments and will play alongside me. He especially enjoys pretending to breathe through an extra neb cup that I let him play with.
Guilt is unfortunately a big part of parenting, whether chronically ill or not. You are obviously a wonderful mother, so don’t beat yourself up too much!
Thanks so much for sharing this… I *so* totally understand what you mean. My daughter just turned two and I’m sick. I know she has already needed to miss out on things because of my chronic illness(es), but I like to stop and think about the kind of person she will grow up to be because she grew up understanding about differences, limitations, patience, and compassion. In the long run, having a sick mommy might work out to be a huge positive in her life.
VAF–thanks for the comments! I have totally been there, wanting to cancel so I can do what she needs, but tell myself she needs me to be healthy. And then there are the times I have to cancel b/c she needs to go to the doctor, but that’s another story…
Lindsay-I think you are right on with the lessons she will learns and the positives she will gain. Speaking as the child of chronically ill parents, I definitely saw a lot growing up that helped me recognize when others are suffering or in pain and how illness can change the equation.
This made me realize (which I have also been thinking about a lot), why most of my friends are not my age. Because once many get close, I lose them when my illness gets in the way too much or dramatically worse. I feel guilty over lost time in high school, which was 4.5 years ago. My close friends are people closer to my parents’ ages, because they realize I need that extra-ness once and awhile. Many young people who have never had chronic illness, think the world should revolve around them, EVEN when a close friend just needs an extra moment.
Fear is not of God.
You have to have faith that the Lord will work everything for your good even though i the natural it may seem hopeless.
Your job is to stay healthy mentally, physically and emotionally. The enemy of God will use your “Fear” to keep you feeling liek your ion bondage.
Everything will work out. You have to remain positive.
Laurie I definitely relate to the feeling of guilt that comes along with a chronic illness. Guilt is something I constantly struggle with.
I’ve been living with a chronic illness since the age of 7 and now at 24 that guilt is much more prevalent. I have guilt about that fact that my husband brings home the majority of the income because of my inability to have a “normal” job. I feel guilt about the days when housework doesn’t get done because of my low energy. And I feel guilt when I have to rely on others.
I think guilt and chronic illness go hand in hand but I’m working on it. I try to remind myself that I am much more than what I do.
Wow, I cried reading this post. I struggle being there for my friends when I’m just doing my best to be a wonderful Mother to my 7 month old daughter and wife to my husband. We’ve lost so many friends due to my illness. Some people aren’t as sensitive as they let on. I actually had a couple tell us that they were exhausted with reading my facebook statuses over the last 7 months because I had so many complications after the birth of my daughter that I woud update from the hospital. I spent every month in the hospital since Hannah was born.
3 invasive abdominal surgeries & 3 blood transfusions with 2 months of giving birth, abscess after abscess, hematoma, seroma, Total abdominal hysterectomy, CDIFF 3x within 2 months and now recovering from a bad Bronchiectasis flareup with bronchitis. Spitting up blood and green plugs, I sound like a barking seal. You know the drill.
So lucky to be alive Laurie, so thankful to have my beautiful daughter. The struggle? Medicaid, insurance…disjointed care and Doctors who pass me off because they tell me…”you’re too complex”. Then they get angry because I’m frustrated and then I’m stereotyped as an anxiety case for defending and advocating for better care.
I know this guilt. Guilt even when I’m struggling to breathe, doing my vest and nebulizer and trying to interact like other healthy mothers with their infant. I lay awake and cry at night because I wish lung disease would become a distant memory. I just want to be a normal Mommy!
“But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.”
This made me cry so hard…that is EXACTLY an issue I’ve encountered. I’m trying so hard not to feel guilty when I’m hacking it up, trying to breathe so I can do my best to tend to her needs. I hope it doesn’t affect Hannah long term. I worry too.