20 Secrets of Moms With Chronic Illness

Being a mom with chronic illness means you may face some unique parenting challenges. You might have to create ways to entertain your children from bed, or teach them how to do their own chores from an early age, or balance your doctor appointments with their after-school activities. It can be an isolating experience, as you feel surrounded by moms who seem to “do it all” while you’re coping with often-hidden challenges of your health condition.

We asked our Mighty community to share a secret about what it’s really like being a mom with chronic illness. This Mother’s Day, be proud of all you do for your kids, and know there’s a community of moms out there who understand what it’s like to be a parent while dealing with the pain, fatigue and stress of an illness.

Here’s what our community told us:

1. “I let my kids entertain themselves by watching TV or playing video games [a lot] so I could rest. I did my best to read with them and do homework while resting, but sometimes I needed a break from the questions so my brain could rest. I still feel guilty even though my older two are in college and doing well. I regret how much time I spend in bed despite knowing I have no choice. Funny how we moms beat ourselves up for things out of our control.”

2. “You constantly feel guilty and feel like you’re doing a bad job. And sometimes your pain or illness gets so bad that you’re short, snappy, angry with your kids and then you feel sadness and despair because they’re not old enough to understand what it means when Mummy is sick all the time.”

3. “My chronic illnesses have caused me years of infertility. I have one miracle daughter who I cherish. The pain is something I never share: that I’ll never be able to give my daughter a sibling. Many people assume because I have never had any more children, I just don’t want more. When the truth is, my biggest dream was to be a mom to lots of kids.”

4. “[You wonder] if they still love you even though you aren’t like other active parents. [You wonder] if you’re good enough for your kids or somehow if you were gone if they’d have a better life.”

5. “I have been doing things with my daughter that she is unaware of, in case I die. Like we took mommy/daughter pictures while I still looked presentable enough, I bought her a record-a-story book so she’ll always have my voice, and I snuck in a sweet phrase at the end, and I’m keeping a journal for her about her, how proud I am of her, how I’m sad I’m not here anymore (journal to be given after I die), things like this. I think this is the first time I’ve ever really told anyone. Everyone thinks I’m so strong, but inside I’m so afraid for her, she’s only 5.”

6. “My son is my greatest joy. On days I want to give up he gives me every reason to keep going, I’m sure no one including him realizes just how desperately I need him every day. At 5 he is the kindest, most compassionate, understanding little person. He understands when I need to snuggle/rest will tuck me in with every stuffie he owns and suggest a bath if I’m limping. He is amazing.”

7. “They don’t know it, but before each surgery I write them (and my loved ones) letters in case I don’t make it out. Also having them help me bathe, use the restroom and get dressed after surgery is very humbling. I feel less of a mom when I can’t be as active with them as I once was and provide for them like I used to, but I’m truly blessed that they understand.”

8. “People see the great mom because they see the things I’m able to do — they don’t see me in bed and my son watching Netflix. They don’t hear me losing my temper in the car, at home, crying nonstop. They don’t see the lunches consisting of Lunchables or a microwave pizza he made himself, or the ham and cheese bagel he brings to me that he made because ‘Momma, you need to eat, too!’”

9. “My real secret is trying to make my girls as independent as possible, or at least not to rely solely on me. From cleaning, laundry, cooking basic meals, and being able to go stay the night at alternative houses. Don’t get me wrong, I love to be around my kids, but I have a chronic, terminal illness. So I encourage outings without me, and for them to try to do things themselves, and to not base an activity they want to do on whether I can go. If for some reason I pass, or am hospitalized for long period of time their milieu won’t be such a drastic change… I do as much as I can but when I can’t I had to give them permission to have fun, laugh, be silly, and soak childhood and to not feel guilty if I miss this one because my joy is wrapped up in listening to them tell me all about the excitement and seeing happy faces.”

10. “I don’t even attempt to make plans, generally speaking. Because if I’m not sick, I’m glued to my kitchen preparing meals, always worried about what I can eat next and having enough. Play dates happen only if it’s spur of the moment and I know I’m good. Otherwise I plan to stay close to home. I don’t know if my kids know or sense this, it’s possible they’re just used to being homebodies and don’t know any different.”

11. “I never make promises unless I know for sure I can keep them. I try and be as honest as I can with my daughter. I frequently beat myself up feeling like I’m not doing enough, but I try to take a step back and see that I’m doing OK. I’m doing this alone and I’ve a thoughtful, happy, healthy, beautiful girl who is kind and compassionate.”

12. “I do all sorts of things I really shouldn’t do and push extra hard to give my son ‘normal.’ I pay for it, but it is worth it to me. There are so many things I have skipped out on, missed, or stayed back from. It’s not how I wanted it to be, and some days are full of failure and guilt. My goal is when I’m gone that he’ll remember that I tried.”

13. “Every day I live with the fact that my chronic illness has caused me to lose pregnancies very early on. It doesn’t make me less of a mom, but I’m terrified that I will never hold my child in my arms.”

14. “Being chronically ill for the duration of my daughter’s life has made her compassionate, independent and very sensitive to other people’s body language. She is one of two people who knows when I’m ‘faking it’ to get through the day. She is also good at discretion in the name of preserving someone’s dignity. My being too ill to do everything has given her life skills that she might not have had otherwise.”

15. “Sometimes it’s really hard to play with her. She asks and asks, but I can’t find the energy. It’s either a migraine, dizziness, or just fatigue… but sometimes I just can’t do it.. And I feel terrible.”

16. “They will constantly shock you and amaze you. I laid in bed listening to them play unable to move, I was so sad hearing them play knowing I couldn’t be with them. Then I heard them running up the stairs: they had bought me flowers picked from the garden.”

17. “Having to work two jobs to pay the bills but being anxious and worried the entire time because I’m worried my symptoms will flare up at work. So I have to be at work all day away from those I love, but it’s even worse because I’m worrying and anxious the entire time.”

18. “[I have] internal comparisons towards other normal and healthy moms! I always feel guilty about not being able to do it all… Many times I would see on social media my friends, who were new moms as well, going out on these adventures, while I was sitting at home with ‘Toy Story’ playing on repeat. The comparisons that leave you feeling guilt-ridden were feelings I typically kept to myself!”

19. “It hurts your heart when you have to say ‘no’ because your body is in pain and so fatigued that the thought of adding anything else is cause for panic.”

20. “It makes my heart swell and break at the same time when my 3-year-old son sees me in pain and helps me to a chair. He says things like, ‘Don’t worry, Mam, I got you.’”