If someone were to ask you what the hardest part of living with chronic illness is, they might expect you to respond with one of the physical symptoms you experience, or perhaps how this symptom affects your ability to do certain activities. But for many of us with chronic illness, grappling with the mental and emotional side effects can be just as challenging some days.
One of the most common feelings chronic warriors may struggle with is guilt. There is no reason we should have to feel guilty for an illness that is out of our control; still, it’s so easy for those nagging thoughts of “being a burden” or “not achieving enough” to creep in, and whisper hurtful lies.
The guilt that accompanies chronic illness is complex, and often takes on a variety of forms. We wanted to shed light on the reality of how guilt can affect chronic warriors, so we asked our Mighty community to share a type of guilt they experience due to chronic illness, and how they cope with it. The list below reveals some of the most common reasons why people may experience guilt, though it’s certainly not exhaustive. If you struggle with guilt, know you are not alone. No matter what health challenges you’re facing, you have immeasurable value and purpose, and we’re so glad you’re here.
Here are the types of guilt our community shared with us:
1. When Your Illness Affects Your Partner
“I feel guilty that my husband is going through this too. He married me well and now that I have lupus, he stays by my side every step of the way. He could have a much simpler life but he is still here with me. I love him more and more each day for that.” – Marisa P.
“The guilt of all that is put on my husband and family because of my illnesses. The guilt of feeling like I’m not pulling my weight in my marriage because he takes care of me more than I of him. The guilt of not having a ‘normal’ life! I cope the best I can, and my husband is so understanding of my thoughts and feelings and goes out of his way to make me feel less guilty… I don’t know how, but I got lucky when I met him, and I’m not sure I could make it through my days without his unending support and love!” – Amanda L.E.
“I feel guilty because my husband works six days a week, 12 hours a day, soon to be a lot more hours. He works for the post office, and yet he cleans most of the house, helps me with laundry, dishes and making dinner. Plus I can only work part-time and he is perfectly OK with everything! He has never once complained or gets mad when I have to lay all day and I can’t do anything. He is always happy to help with whatever I need.” – Vienna L.
“I think the answer is, you don’t always cope with it. You let it happen. But in the moments where you build enough strength and collect enough energy, you are grateful. Grateful for the small moments, the glimmers of hope, and in those moments you surge with everything you have. In those moments, I tell him how much I appreciate and love him. I support him when he needs it. He gets a pass in those few and far between times when he gets frustrated — not necessarily at me, but along with me. Like my illness, I can’t always stop the guilt. The truth is, my guilt comes from my immense love for my husband. So, as often as I can, I let the love consume me instead of the guilt.” – Hannah Herrington
2. When You Need to Cancel or Change Plans
“I feel guilty that I cannot often attend social occasions with friends. I’m not the same person to my friends that I used to be, I don’t even know what to talk to people about socially anymore – my whole life revolves around my health problems and nobody really wants to hear about that for more than a few minutes (understandably!).” – Laura S.
“I find myself apologizing to others multiple times a day. I could think of so many reasons. I apologize for any inconvenience on anyone else. It could be because I slowed them down, had to alter plans, different transportation, anything that hinders doing something the way they would have if I wasn’t slowing them down. I feel horrible and so guilty if I have to cancel, alter or change plans of any kind. I feel guilty asking for some help with things – usually physically and mentally but at times I need help monetarily or things like rides.” – Melissa R.
“I feel guilty when I have to cancel on people. I don’t think everyone understands and I feel sometimes people think I don’t want to go or am being lazy but it upsets me that I have to miss out because I am too tired or to unwell.” – Lisa M.
“I feel guilty when I have to cancel plans or change plans with friends due to symptoms or bad days. The best way for me to cope is to explain everything to my friends and ask if they want to come over and watch a movie or accept their support and love through the hard day I might have had.” – Kesley
“When my guilt takes over, when that monster is laughing so loud I can barely focus, I try to remind myself that I will not be able to show up for my clients if I don’t show up for myself. Sometimes that means I must prioritize my own health and needs. When I tell myself this, I like to believe that the monster shrinks a little bit, or that his laugh becomes temporarily silenced.” – Rebekah Gibbons
3. When You’re Unable to Keep Up With Your Kids
“I feel guilty that I’m always sick. My kids want me to be more active in their lives, and my 7-year-old just asked me again today why I’m always sick. I feel guilty that I’m sick, guilty that I can’t play, and guilty that I don’t know why…” – Sarah R.
“Mom guilt is strong when you don’t have a chronic illness, but compounded when you do. I have stayed home and bawled through missing my kids’ school programs and sports events. I try to make it up by having my husband videotape when he can so I can watch it with them after, and they love to be able to see what they did as a spectator. It doesn’t take away all of the guilt of not being there, but it helps take away the sting.” – April R.
“Mom guilt… not being the mom I used to be. Not being able to do the fun stuff and leaning so much on my eldest daughter for help with her sister. It’s awful. Cancersucks.” – Jennifer H.
“Oh, the mom guilt is the worst. I do feel guilty that my husband stresses over the financial burden of me not having income right now as I fight for SSD, but knowing I can’t do the things I used to with my daughter crushes me. We don’t take zoo trips anymore. We don’t go run and play at the park because on good days, walking short distances is the best I can do. She takes it in stride, but I wish it didn’t have to be this way.” – Doni N.
“I remember one day when my kids were little I was so sick in bed for days and days. I felt so guilty and so bad. And God whispered to my heart and said, ‘If all that you do today is love your family… It’s enough!’” – Jenny W.S.
“Our mom instincts and skills will always prevail over our chronic illness. We may not do everything like the mom down the street, because we all parent differently. We are imperfectly perfect mothers. I am currently writing this while sitting next to a 5-year-old who told me it helps his ear to feel better if I lay with him while he sleeps. It is abundantly clear to me that my chronic illness does not define my parenting. I can be supermom and tired mom all in the same day.” – Samantha Malone
“There is the answer for us all and it is so simple and so sweet — gratitude. This is how you conquer this chronic illness guilt with your children, whether you are a mom or a dad. Teach each other gratitude. Re-instill that the little things in life are so very important. You just being there is something to celebrate… In all honesty, they just want you — cane, limping, hurting, shaking, twisted or in bed, they just want you. So to hell with the unbearable Mommy or Daddy guilt. To hell with perfection. My legacy will be one of strength. I will teach them to be grateful for the small stuff. To end each day reciting three things they are grateful for. Then I will put my money where my mouth is and tell them three things I am grateful for. They may be small. The list may sound like this: ‘breathing, take-out and television,’ but it will be gratitude and with that they will see strength.” – Lynn Polizzi, LCSW
4. When You Depend on Others and Feel Like a ‘Burden’
“I used to be so active and productive and loved to give my time, energy, and gifts to others. Now I feel guilty because I am on the receiving end of most of my relationships. I feel like I’m not ‘pulling my weight’ in this life any longer and am a burden to people.” – Debby R.B.
“The guilt of being a burden… taking time off of work, again (even when I have the sick time and my teammates are amazing); asking a friend to help clean your house, again because you can’t keep up and don’t have the energy to clean it now; needing your brother to help you maintain your yard, again because there is no way you can push a mower or clean the gutters safely; discussing moving back in with your parents, again because your health has gotten unmanageable and you can’t afford your medications and utilities at the same time. All the things ‘normal’ people can handle that you need help with, again, no matter how much you don’t want to ask for help.” – Bay H.
“The guilt of not being able to be independent, having to be dependent on my mom for everything, even the simplest things I just can’t do myself!” – Greta M.
“I worry about burdening loved ones, but I know that, if the roles were reversed, I would wear the burden gladly.” – Shannon J.
“If you are feeling useless and guilty about needing help to manage an incurable disease, don’t be so hard on yourself. Chances are, the only one who feels like it is a burden is you. You are not the same person you were before you were diagnosed and you shouldn’t act like you are. Being kinder to yourself is a great medication and by taking the time to take care of yourself, you can help ease your mind of these harmful and unnecessary feelings.” – Kelly Glover
“The years of so many people giving of themselves because of my great needs has turned me into someone who will help anyone as much as I can. That’s how I’ve learned to manage the irrational guilt I have over needing assistance. Guilt, which I’ve read in The Mighty community, is such a common yet unnecessary feeling. I’m trying to combat mine by giving back when I am able.” – Carissa Haston
“You, my dear friend, are not a ‘burden.’ Your illness is a heavy weight, and it is your weight. But even being solely yours, it cannot be carried by you and you alone. Because you are a friend, family member, gift, warrior and fighter, chances are you have a support system to help you carry it. Do not be afraid to ask for help. The ones who are meant to stick around will ask how they can help share that weight whenever they can. You were not made to carry this alone.” – Mary Puglisi
5. When You’re Unable to Work and Contribute Financially to Your Family
“I feel guilty for not working. I was in the social work field full-time for 17 years and carried our family insurance. I really pushed myself in the end because I knew how much financial stress that would put on us if I lost our insurance but my body finally gave out. My husband has always run our cattle operation and had to get a ‘regular’ job on top of our cattle, for us to have insurance, so he works beyond long days and seven days a week. It’s extremely difficult to push away that negative self-talk some days as well as the negative comments of others who think I’m ‘lucky’ for not having to work but I cope with it by helping my husband out when I am able and trying to focus on the positive. While I will always battle symptoms and my energy will always be limited, the energy I do have is now spent all on my kids and my family.” – Rebecca L.
“I feel guilty for not working right now and help bring income.” – Alejandra S.
“Money guilt! I’m 21, so I’m technically an adult, yet I don’t have a job, live with my parents and my medical treatment for chronic Lyme disease is hundreds of thousands of dollars! I feel so bad that they have to pay for that since insurance won’t! It’s so expensive but we have to! I’m so lucky for them.” – Cassidy S.
“You don’t need to feel guilty if doing what’s right for your body means not working. The next time someone attempts to say you should be ‘doing something,’ remind them you are doing the best you can with what you have been handed, and most importantly, remind them to be patient. We are only human, after all.” – Karla Culbertson
6. When You’re Unable to Do Household Chores
“The guilt of having to watch my husband do the housework, after he as put in a long day at work, because I can’t do it.” – Regina B.B.
“I can’t help around the house or even cook when I have a flare-up. I am very dependent on my husband. We had plans for our retirement and they have had to be abandoned. He doesn’t mind looking after me. It’s me who has the problem of guilt for what he has lost.” – Rosie K.
“I feel guilt over not being able to get around to house chores or sometimes even something as simple as a shower for that day. I cope with it this way – I ask for help. My husband gladly does it and as a matter of fact he is washing clothes and folding them tonight… I use Clorox wipes to clean with and he cleans the bathtub. I spray down things with Febreze and we go together to wash the comforters if I am in pain. If I’m not in pain I bring the comforters to wash myself. He cleans the windows because that wears me out bad. We take our vehicles through the car wash and we both vacuum. I do as much as I can and he picks up the slack. I have a lot going against me but my life is what I call a ‘new normal.’ We accept my illnesses and I am thankful to have so much help. So to make a long story short I feel guilt for falling short on household chores and I cope with it by asking for help.” – Amber M.
7. When You Feel Like You’re Not Living Up to Your Potential
“I am feeling guilt because I am not living up to the person I want to be. I want so bad to be up and mobile, to get dressed up and be part of the outside world. In turn, I’m letting myself as well as my sons down because I can’t do these things. I am dependent on them and it breaks my heart. In my way of coping I just try to self-talk and remind myself this isn’t my fault, there is no cure and most likely I’ll never get better (unless a miracle happens). I need to come to terms that this is my life now. It’s not as easy as it sounds. I have several illnesses and I keep telling myself that if even one part got better, then maybe I could do more things. I’m afraid I’m giving myself false hope.” – Kristine C.
“I feel guilty because I have an amazing job and the opportunity to influence young women and I don’t have the energy to do it. Every single day is a struggle just to do the bare minimum. I fear I will look back 10 years from now and wish I was able to do more.” – Jordan C.
“I have had opportunities, personally and professionally, that have been really fantastic and in some cases once-in-a-lifetime. However, because of my declining health, I’ve had to stop each and every single one of them. Managing my emotions around this is probably as hard as the physical act of having to stop… It’s OK to grieve for what you feel like you’ve lost, and don’t let anyone tell you that it’s not. I just think it’s just incredibly important to not let it overwhelm you entirely and keep you stuck there… My current way of dealing with life is that I just have to go with the flow.” – Natasha Lipman
8. When You Feel “Survivor’s Guilt” for Living With Your Chronic Illness
“I feel guilty for being alive when I see people who contribute so much more to life and they pass away. They have families and friends that love them. I am grateful I am still breathing.” – Acadia M.M.
“I feel guilty when I struggle. I have had many illnesses and been through a lot. When people say things like, ‘you are lucky to be alive’ and ‘at least you made it’ it makes me feel terrible survivor’s guilt. So many people have been lost to the battles I have fought and I have the audacity to struggle and complain about my residual conditions and comorbidities! That gives me a lot of guilt.” – Melissa M.
“Survivor’s guilt has no end, and for many of us, it began before we ever knew what it was. But I can promise you it will be one of many motivations for me to make changes in the CHD [congenital heart disease] world. While I carry a heavy weight of guilt, I also carry those lives as motivation to keep me moving forward as a CHD advocate. I will fight for those we lost and those that live until the day I get called home, I can promise you that.” – Joe Valente
“I’m one of those people who believes that there’s a reason for and a lesson in everything. I truly believe I wouldn’t be the person I am without my disease. But that doesn’t make it any easier when I watch people die from the exact disease I have. I feel so guilty… In a way, it steels my heart. It’s broken inside, but the iron around it makes me want to fight harder to help. It’s why I keep writing – yes, for me, for my mental health. But also for all of us who are still here. Who are still fighting too. Because for some reason or another, we get to still be here.” – Lala Jackson
9. When You Feel Like You’re Not Contributing to Society
“The guilt of not being a ‘functional’ member of society. And that category has subcategories, like the guilt of not being able to go to work and school, the guilt of not being able to do as much cooking and cleaning as others, and mostly the guilt of missing out on special days and events with family and friends.” – Savannah M.L.
“Because I can no longer work due to a work accident, I feel like I am not contributing as I should be!” – Russ C.
“Being chronically ill has, unfortunately, given me a ‘self-worth’ complex. That makes my inability to reliably work so much more difficult. But I keep telling myself this one thing my husband and my therapist have both been trying to drill into my head: ‘Your worth is not contingent upon your ability to do stuff.’ Maybe one day I’ll find a job that lets me work when I can and won’t end up putting me in the hospital. Until then, I will keep reminding myself that I’m worth more than I think I am.” – Mikki Ingram
“Instead of trying to be ‘the best’ at something, I now try to be the best person I can be, and the questions I ask myself are less often, ‘How well did I accomplish that?’ and more often, ‘Was I kind to that person? Was I generous? Did I listen well?’ When I have a bit of energy, I might write letters to friends, or call a member of congress about legislation that could help people who are chronically ill, or take part in a research study to help find better treatments for people who come after me. I’ve assisted in medical school courses that help clinicians-to-be see the ‘full picture’ of living with illness. These things are unrelated to my original choice of ‘work,’ but they feel worthwhile and valuable to me.” – Alyson Knop