Guilt and the Chronically Ill Parent

From the age of three I longed to be a mother, and it never occurred to me that for reasons beyond my control that might prove difficult.

I have lived with chronic pain since before my oldest daughter was two years old. By the time she blew out five candles, I'd been to the Operating Room five times.

Throughout my life, despite a loving, stable family and good upbringing, I have encountered health challenge after health challenge. Just as I had prior to motherhood, I fought to rise above and not let my health overcome the person I wanted to be and the life I dreamed possible.

I searched for treatments that would fix the problems and continued to fight to overcome, or at least diminish, the pain so I could be the best mother I could be, not offer my daughters only a portion of my attention, love and energy.

Sometimes it feels that as soon as I rise above one problem, another surfaces. When my oldest was six and my youngest three, I was diagnosed with a disease that had also attacked my father when I was a child, Ankylosing Spondylitis.

As difficult as it is to be elderly and stiff, in pain, and have trouble getting around, imagine those problems when you are 30, with a job, a household, and small children. Arthritis, unfortunately, does not only effect the old. Diseases like Ankylosing Spondylitis and Rheumatoid Arthritis typically strike between the ages of 15 and 50.

And so it is that I am raising my young daughters in constant pain with a body that operates like it's 80.

Determined not to feel guilt over the worry and strain my disease places on our young marriage and family, I become very clear on exactly what I want my daughters to remember, on the childhood memories I want them to have, and most of all, the mother I want to be, and then I work twice as hard and resolutely to be that mother, to create those memories, and to make the love I give so strong and the legacy I leave so rich that it overshadows the pain and the slower pace with which we must live life.

Guilt is easy to feel when you are a parent and even more so when you are a parent with chronic pain, but I will continue to do what I do best: love my girls. True love defeats fear, defeats guilt, and will defeat chronic illness. I will be a good mother because I will make it my biggest priority to love well.


  1. And yet, despite the troubles you face, you are twice the mom others could ever hope to be. I often look up to you and find myself thinking of you when I am exasperated as a parent. You are such an example of what a Godly parent is.

  2. Oh Kei, my friend, you humble me. I so desire to be a truly good mom and a Godly parent, and so often I fail. Thank you for the encouragement!

  3. brilliant post, look forward to reading some more

  4. You write so beautifully and explain things so well! I am in awe of how you can concentrate years of pain, fear, and medical interventions into an artful sentence.

    Since the moment my water broke, my experience of parenting has been a vicious struggle to adjust my expectations to the reality we actually face. Perhaps I had some of that in my life before, but it was certainly never to this degree. The latest round is leaving me gasping and raw so that I identify strongly with that aspect of this post. I have to continue to breathe and remind myself that love may cover a multitude of error, and the most important thing is for my child to have no doubt that he is unconditionally loved. But you say it better!

    Love you, Wendy

  5. I hear you loud and clear. I love your heart and how you choose to be transparent. It ministers to so many of us. Thank you.

  6. It's nice to know that I am not alone with parenting while having a chronic illness. Sometimes i feel like i don't do enough for my kids. I do know they are learning life lessons that they couldn't learn otherwise. They also know how much they are deeply loved!


  7. Jennifer,

    Just found your blog and I'm so glad I did. I was diagnosed with AS in June, have 2 daughters (3 1/2 and 11 months) and have been trying to navigate through this season and find a "new normal". I look forward to reading your blog and getting to know you more.

    Gentle hugs,


  8. This is my hardest topic as well. I've been dx since 2001 but was full blown for 5+ yrs before and symptoms started in about 1st grade. I flared in 2005 a few weeks before my daughter was born. We adopted so no pregnancy related and not stress as we didn't even know about her when the flare started. I've never gotten in controlled and also have one new mountain as soon as I finish the last. I struggle with my daughter not really knowing "me". But I realized she was listening when she recited all of my accomplishments prior to disability. She use to say I "stayed home to clean" when she went to school since I couldn't care for her. I thought finally she realizes I am more on the inside. I too believe love is most important. I personally believe they need lots of knowledge vs pretending it is fine. It is hard enough being a parent let alone with chronic pain and disease. It is full time job caring for ourselves. Thank you for putting it out there and helping others to understand. ;)

  9. I just found your blog today while cruising around reading about Sara. This parenting with a chronic illness is tough sometimes. I wonder if I could do it more gracefully, more lovingly. My heart breaks every time that I tell my sweet kids that mommy doesn't feel good today. Will they have the "mormal" childhood that I wish for them. Your posts were such an encouragement to me today- had a hard today with the pain and fatigue of fibromyalgia. Thank you for sharing.

  10. My child has proved to me that kids cope very well with their parents' weaknesses. Be they temperamental or physical. They cope. But we inevitably feel the guilt. My personal solution is to fill time as much as I can with what I can do with my son or not. And I'm lucky my son is quite happy to be an only child because another kid is not a valid option.


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