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15 Truths Parents With Chronic Illnesses Wish Others Understood

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Parenting can be challenging enough. Add the demands of managing a chronic illness, and life is suddenly filled with a new set of difficulties others may not deal with — or understand.

To illuminate what life is really like “behind the scenes” for parents with chronic illness, we asked our Mighty parent community with a chronic illness to reveal what they wish others knew about their lives. Above all, they ask for less judgment of their parenting and more compassion for the obstacles they face every day.

Here’s what they told us:

1. “My kids are not going to suffer from having a parent with a chronic illness. They are going to be more compassionate and thoughtful people.” — Chronic Mom

parent chronic 1

2. “When you see me being involved in my children’s lives, don’t ever doubt for a moment how much strength and determination it takes to get up and go every single day. Outsiders may only ever see a smiling face, but don’t doubt that the majority of the time I have to take life one hour at a time. Every hour of every day is a struggle; you do not know my story or how much suffering is done behind closed doors, or how carefully I have to manage my days to be there for my children.” — Jen McCarron

3. “Guilt is an everyday thing. I feel terrible for being gone to appointments all the time, or that my 4-year-old has seen me take my many medications and doesn’t quite understand why Mommy needs so many vitamins. So if I cancel, don’t guilt-trip me. There’s a lot going on in my life, and my spare energy is spent on my babies.” — Jordann Chitty

4. “I do not miss important events because I want to! My children are my priority; however, my illness does not care. I am lucky to attend the functions I do!” — Robyn Eastwood

parent chronic 2

5. “My chronic illness (Type 1 diabetes) has actually been a great way to relate to my blind son. We both have ‘imperfections’ with our bodies, but that doesn’t mean we are incapable of leading passionate, vibrant lives or that our value lies in our physical state. We get the opportunity to be creative problem solvers as we find ways to accomplish daily tasks. We can find joy in small things that others take for granted.” — Whitney Mielke

6. “Life is topsy-turvy, and yet I still do everything in my power to take care of the family. I might not look exhausted or stressed because I smile and laugh like an actor on a stage, and then whenever I can I fall apart at home when the kids are asleep, unable to move or think, only to do it again the next morning.” — Jacqueline Truong

7. “Despite my illness, I am still a great mom. I lean on the help of the supportive people in my life, but that doesn’t mean I’m not parenting her. It takes a village and I’ve carefully selected that village.” — Kristi Curl Mandsager

parent chronic 3

8. “I wish people would understand why we allow my stepdaughter with us at the emergency room. She knows I have heart problems. I would rather she see the doctors trying to help me, even seeing them place an IV. It allows her the chance to ask questions and see that I am being helped. It takes away the fear of the unknown, the wonder if my going to hospital is my disappearance.” — Brandi Frausto

9. “Please don’t ask me why I [have] ‘only one kid.’ My rheumatoid arthritis gave me three years of infertility and pregnancy and delivery that nearly killed me. I love my job, but I also work because I need health insurance, and if I don’t have to be somewhere every day, I won’t get out of bed.” — Stephanie DeNicola Turner

10. “I weigh the energy an activity will take against the returns it will bring for my kids every day — and as often as I can, I make sure if there is a high return, I will use my limited energy to give my kids what I can.” — Kristin Wagner

parent chronic 5

11. “I feel like a failure as a mother since my son has to go to daycare full time because I can’t care for him my myself. I hate it, and I miss him every. Single. Day.” — Sarah Codington

12. “I do the best I can. I don’t volunteer for a lot, not because I do not want to, but because I do not want to back out at the last minute and make things more difficult and appear to be unreliable. Most days the basics are enough of a challenge.” — Cynthia Rhodes Alberson

13. “I hate having to tell my kids no when they ask me to do something with them because Mommy doesn’t feel good. I don’t need anyone else to tell me I’m not doing enough with my kids. I beat myself up plenty for it.” — Hannah Wingert

parent chronic 4

14. “I do my best, and for my family that is more than enough, but in dark moments I cry for the next generations who will inherit my genes.” — Joy Hanford

15. “It pains me to see my children live in fear of my seizures and ensuing injuries. But I’m so proud of them for taking care of me when I do fall.” — Heather Baumann Kau

If you’re a parent and have a chronic illness, what’s one thing you wish people understood about your life? Let us know in the comments.

Originally published: February 23, 2016
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