The Truth About Being a Parent When You Have a Chronic Illness

Having a chronic illness and being a parent can feel like you’re being pulled in two different directions. You’re forced to balance the physical demands and limitations of your illness with taking care of and spending time with your kids. It’s a juggling act that can have profound effects on kids and parents — both positive and negative.

We asked our Mighty Facebook community to share the truth about being a parent with a chronic illness. While many parents reported feeling guilty for how their illness affects their kids, they also reported watching their kids grow into compassionate, patient human beings as a result of watching their parent’s battle.

Here’s what the community told us:

1. “It’s simultaneously my savior, the reason I get up every day despite the pain and fatigue, and the dark shadow reminding me that I’ll never be that healthy mom who goes to every event, or runs with him in the park. That some days, weeks or months in the hospital without him are often times more painful than the flare itself. Parenting is hard on top of chronic illness, but I’m so grateful that I have him to keep me grounded, I don’t know what I’d do without that love.”

2. “They keep me going. However, they exhaust me too. Most days I feel like my health cheats them out of having a mom like their friends have. I spend a lot of time doubting myself as a parent to my kids. But no matter how I feel I always get back up the next morning and do it again.”

3. “I always feel guilt. Guilty when I don’t feel well. Guilty when I do feel well but I’m worried about rationing my energy waiting for the other shoe to drop. Lonely. You can’t plan ahead for a hard day when symptoms will be bad, it can just be there when you wake up, or it can hit you halfway through the day without much warning… However, I’m raising compassionate, flexible, loving people and their capacity for unconditional love is bottomless. I can only hope that their experience with a chronically ill mum allows them to shine that compassion out into the world as they grow. It will be the one thing that makes this worth it.”

4. “I feel like my boys are missing out on fun and normal. I know they don’t like to see me sleeping or laying down. I know they get tired of me saying I’m tired… At the same time, they help me so much. They push the grocery cart, carry things that are heavy, and always seem to know when I need a hug. Mostly, I feel sad for them. And sad for me. It’s hard to miss out.”

5. “It’s horrible and exhausting and hard at all the same time! But now later in life seeing how sweet my sons have become! How much they care! And what wonderful men they will become because of the life they have to live with there mummy being so sick and tired all the time.”

6. “My son shows me so much love. Even at only 5 he is keenly aware of how I’m feeling and will tuck me in or get a drink if need be. He’s my greatest reason to continue fighting.”

7. “I struggle with the idea that my daughter is growing up helping me with things, and even taking care of me at times, when I’m supposed to be the one taking care of her. Ever since she was a baby she’s visited me at the hospital, it’s normal for us to be looking through old pictures and see ones taken in various hospital rooms… She’s helped listen to my heart, take my blood pressure, even draw blood with a syringe from a port in my arm with my nurse. I worry that with all of this she’s less of a kid, or I’m cutting her childhood short. My daughter is set on being a doctor when she grows up.”

8. “I’d like to think that being the child of a parent with a chronic illness has helped my children. I think that they’ve had to learn more about compassion, patience and what love truly means. It means that ‘stuff’ is never more important than the time we spend with each other. It means that the calendar is just a piece of paper with numbers. Sometimes the birthday dinner we are having happens before or after the real date. You’re careful with your words because sometimes when you’re not feeling good? It comes across wrong. So you also learn to say I love you, I’m sorry, thank you, and forgive me.”

9. “Having my son helps me to focus on him instead of my pain. I will push myself a bit more to be there for him. Sometimes I feel guilty when I can’t do the things that I want to do with him but he hugs me and says, it’s OK, you’re an awesome mom.”

10. “It’s not easy on them and I know that. They have sacrificed a lot in their young lives that kids with healthy moms have never had to think about. They have never know what it was like to have a mom who was able to rough house with them, or had the strength to carry them every time they asked… But on the other side, they are my daily motivation to continually fight my illness. To try everything in my power to give them the best memories they can have with me possible because in the end that is all I can do.”

11. “Hard! But worth it! Beautiful and sometimes not. My reason to live, my reason it’s all worth it, plus the most amazing considerate empathetic human beings are my children and I can’t wait to see what amazing adults they become and my pain I believe has in a way crafted them into more understanding compassionate people.”

12. “My girls have learned great work ethic and independence. They saw me as a single mom provide for them even when I could barely walk and having a back surgery almost every year for 15 years.”

13. “Being a parent with a chronic illness is living with the fear that you are not physically and emotionally present enough for your child(ren). Being a parent is also why I wake up every day and continue to fight even on the days when getting out of bed is the only thing I can accomplish that day.”

14. “Good and bad. Some days I wish I had the strength and energy to do more, especially because I have a 4-year-old boy. Other days when I have more energy, I try my best to do most of what will bring him joy for that day. It’s tough.”

15. “It is amazing to see the pure innocence and empathy of children. When they know you are hurting or ill and they try to take care of you by bringing you blankets and pillows, or giving you their favorite stuffed animal to ‘help you feel better.’ It is truly a heartwarming thing to experience.”

What is it like being a parent with a chronic illness? Share in the comments below.

Thinkstock image by Sasilstock