Two Scoops of Chocolate and Salty Tears

By Casey West Robertson | June 7, 2023

As a parent and caregiver of an undiagnosed disease patient, we face many emotions and mental wellness challenges on our journey. Some of these emotions come in cycles when milestones are not met, and others come daily with the tasks of caring for an undiagnosed patient. We are consumed with day-to-day medical routines, appointments, hospitalizations, procedures, multiple therapies, advocating for the best care and insurance approval, and all with just the bare minimum of care. Dare we work a job outside or from home, the challenge becomes balancing the dedicated and delicate care and working to provide for the family financially. Through this we must find a way to cope with the challenges we face. Not all challenges are negative; however, we still must find a way to cope. We joke at my house on a bad day medically, and when things just seem to be overwhelming, by saying “I need two scoops of chocolate ice cream with my salty tears.” No, that is not healthy nor is it a sustainable method of coping; however, in that moment, it is what keeps me hanging on for one more medical battle. 

It wasn’t until I reached the lowest of lows and felt that I could not take any more, and that I realized mental wellness while caring for a loved one is so very vital. I had depleted my mental, emotional, and physical wellness trying to help my daughter have the best life she could. My body was always in fight mode, left overworked and not even knowing who I was. I sat in an empty parking lot holding all her medicine that I had just picked up at the pharmacy wondering where to go next. It is well known but worth mentioning that most families with extended medical battles lose their support systems over time simply because life continues for others while you are stuck in this suspended time of medical unknown. Some surveys show that upwards of 87% of families with disabled children end in divorce. I am thankful to have one of the best husbands and fathers to walk beside me on this journey. 

So…. if chocolate ice cream and tears were not sustaining me, then what could help me cope with the odyssey that we are on. The first for caregivers is to know that it is okay to have both negative and positive emotions around your loved one. You can feel that they are the greatest thing in your life and at the same time feel overworked by the medical battles. It is okay to seek counseling from professionals to help with the coping of the diagnostic journey. I have found that taking care of myself helps me to take care of my daughter. I schedule time on my calendar just like any other procedure to get exercise or just be outside in nature. I found a personal trainer that would help me do the things that I enjoyed. I found if I booked them on my calendar then it was an appointment and commitment that I was less likely to cancel or let get pushed to the side with other tasks. I made sure that the trainer would do activities that I liked such as kayaking, hiking, and bike riding. I rode my first bike in over 30 years and then my husband and I started joining bike rides that fundraise for different causes. It only takes an hour to ride about 10-12 miles and that is an hour of self-care that you deserve. I also found coping in animals. My daughter was gifted a therapy horse and we don’t ride him now due to her balance and pain; however, we pet, feed, and spoil him. We have become the home for several retired horses that just need love in their last days. I also find comfort in drinking coffee and watching the red birds at my bird feeder. Faith is another way that we cope daily. Kylie is too sick to attend school; however, she loves our church where she is accepted and cherished. She might just be a little favored more than other young adults. 

Hope is the greatest coping skill we all can have and through UDN there is Hope to be offered. Even without a diagnosis, the UDN has many teams of doctors that will engulf you with their fire of Hope. They will continue to ask questions and search for answers and think outside the box. Meeting our team in 2022 gave me hope like no other because they were real people with real lives that cared enough about my daughter to search for answers. I could see that finding help for us was important and affected them as much as it affects us. She was no longer seen as a piece-by-piece case; however, she was seen as a whole person that needed answers. Will we get answers, maybe, maybe not. That is not the important part of coping with an undiagnosed disease – it is the Hope for a better tomorrow for all undiagnosed patients. It’s the Faith that working on your journey will help others that you may never even meet. 

Mental wellness is something that we need to focus more on in the undiagnosed odyssey and I believe PEER has opened that conversation for many families. So, friends and fellow caregivers schedule a time for mental wellness, focus on Hope and have Faith that your journey is for the greater good and it is OKAY, on occasion, to have two scoops of chocolate with your salty tears.