Chronic illness affects the entire family. Will with his sister Carmen who is a big part of his team, helping him fight SoJIA.
What does it do to a single parent when a child is diagnosed with a chronic illness?
I won’t pretend to know what effect a chronic illness has on a marriage. My marriage was over before my son was diagnosed with systemic onset juvenile arthritis (SoJIA). If it hadn’t been, I’m sure the SoJA would have been the nail in our marital coffin. I can however, describe in detail how the life of a single parent can change when a child is suddenly no longer healthy. I have lived that life for almost 7 years now.
I don’t share this for sympathy or help. I know lots of people walking this journey who have not just sympathy, but empathy. And I know where to turn if I truly need help.
I share this for a deeper reason. To give you a glimpse of what single life is like with a sick child. When you’re the only caretaker, life suddenly gets exponentially harder. If you are living this life, please know you aren’t alone. If you know someone in this situation, this may make it easier to understand them.
Let’s start with the one that is the hardest to discuss. Money. Whether or not money was tight before the diagnosis, I can guarantee there will be struggles once you add in the cost of co-pays and deductibles (assuming you have insurance), travel to doctor appointments, meals eaten away from home because you either aren’t home or are just too busy, the wear and tear on your car, and adaptive devices designed to make your child’s life easier or less painful. Your quality of life will not be the same. It gets even worse if your job does not allow for adequate time off (that is, if you get paid time off to begin with) to attend all the doctor appointments, specialist consultations, physical therapy, counseling sessions, school meetings caused by medical concerns, and time spent caring for a child who is too ill to be away from home. The added stress can cause health problems of your own. Being sick is expensive.
Having a chronic illness in the family makes everyone a little bit cuckoo bananas. You can’t afford vacations; you use your vacation time on medical attention, and you have to adjust the plans that you do make. Insurance, scheduling, budgeting, and family time pull you 7 different directions. So-called friends drift away because being there for you is inconvenient. You may not be able to continue the activities you once enjoyed. Throw in a child with constant pain or other medical problems, a sibling who is both jealous and concerned and possibly sick themselves, and an ex who doesn’t understand why your child isn’t cured yet, and you have the recipe for a dysfunctional family life. If you don’t have family or friends close that can help, you become exhausted and burned out.
Education becomes a challenge. Your child will miss school. Period. They may have attendance problems and behavior issues (whether from pain or medication side effects). They might be fatigued, get sick a lot or take longer to get well. School personnel may not believe your child has an invisible illness, or they might not understand why they can seem fine one day but not the next day. You may have to fight for accommodations you are legally entitled to. You may have to make the impossible choice between constantly battling the school and homeschooling while working full-time and being a caregiver.
There is also an emotional adjustment that you must make to a new way of life, while grieving the loss of your healthy child. Suddenly your hopes and dreams for your child and his future are gone. You may feel undeserved guilt. You must learn to discern when your child is truly struggling and when they are “using” their illness to gain attention or special treatment. You may have another child who needs your love and attention more than ever. Siblings may develop behavior problems. There is a high incidence of depression and anxiety among family members and caregivers. You must learn to swallow your pride and ask for help. That is after figuring out what help you need.
But please don’t think it is all gloom and doom. You and your child(ren) become closer, stronger, and more compassionate. You meet some amazing people. You make instant friends that last a lifetime. You find new entertainment options. You are more grateful for the good things in life. You learn to adjust your expectations. You model these new skills for your family. You thrive in spite of your circumstances. You learn to stop and smell the tulips.
god bless you son