We all know how challenging it is to raise children. I think having a rare disease makes parenting extra challenging. As a bonus, about two years after my diagnosis of primary biliary cholangitis (PBC), I became a single parent. In a short span of time, I went a household of two parents and two children to being on my own, outnumbered by three boys, with a new autoimmune disease added to my growing list of medical conditions.
It has now been a decade since my diagnosis. Raising my kids alone while sick has been the biggest challenge of my life. It has also been the most empowering and rewarding.
Getting a diagnosis
Initially, it was very scary, as my children were young and required so much from me. My severe symptoms started within days of having my last child, and I honestly believe his birth triggered my PBC. I suffered a lot of the common PBC symptoms. I had no help or support. It took me close to two years to get a formal diagnosis and find the proper specialist. I had so much to learn about PBC, and often felt overwhelmed. My children did not understand what I was dealing with physically or emotionally. I was still changing diapers, giving baths and preparing meals along with all the other things kids require every day. I tried to keep a smile on my face, but my babies often saw me crying.
Within a year or two, I was so run-down. I had to remove my kids from T-ball, baseball, Cub Scouts and even church activities. I have not been able to work, which comes with its own struggles. The everyday tasks of living and surviving took all the energy and funds I had. It was hard on us all, but I had to focus on their basic needs. There was only so much to give. The guilt is still heavy.
Honesty and empathy
I’ve always been very honest with my kids, from the time they were old enough to understand things. I learned that I could not protect them from everything. Of course I’ve kept things age appropriate. From the separation with their father, to my illness and health issues and some financial struggles, I was not good at hiding things, and I wanted them to understand real life. Maybe I even wanted them to understand me and my struggle?
Today my boys are in middle school, high school, and college. I feel they’ve stepped up so much as they’ve grown. I have strong young men. They are independent and hardworking. They are empathic and always willing to help others. They often help me with a lot of the physical aspects of day-to-day life.
Some days are extra challenging, though. The fatigue can completely wipe me out for no reason. And that bike ride I planned just cannot happen. I often think about spending my evenings playing a board game or taking a walk to connect with my children, but I just do not have the energy. By the time we get through after-school stuff and dinner there normally is nothing left in me. There have been many times through the years where I have had to have my oldest cook dinner or order something last minute because I just could not prepare food for us. There are days where the fatigue or itching have kept me in bed or meant cancelling plans.
I have felt like a recluse at times due to my symptoms. It can be lonely. Other parents do not understand.
Taking it day by day
I have found that taking each day as it comes is often easier than being overwhelmed by the big picture. I must give myself grace and let go of the guilt. We all want the best for our kids, but some days my priories are doing the bare minimum, and that’s okay. Finding support when raising kids is so crucial for all parents, but if you have a rare disease, I urge you to find others who understand what you are going through.
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