Today we want to give thanks to our FamilyForLyfe, the friends and families who support all of us living with chronic disease! Our health and happiness are owed both to the incredible resilience in ourselves as well as the love, care, and support of our loved ones.
I have always enjoyed Thanksgiving – it is a non-religious holiday focused on family, food, and being grateful to the people and the circumstances in our life. This year, we focus on the individuals who are supporting and living with someone who, like myself, have a chronic disease. It is easy to forget how hard it must be for the healthy person, not just because of the fears and proximity to suffering, but also the difficulties in how to balance the ever changing ebb and flow of offering independence versus support.
At Lyfebulb we often discuss how tough it is to wake up every morning not knowing if today will be a good day and how our symptoms will arise or affect our life and work. However, we tend to overlook what it is like to be a healthy person who lives through the rollercoaster of chronic illness by our side for every twist, turn, loop, and bump. Our loved ones consider everything from strict dietary requirements to mood swings, to hospital visits that break up the structure of everyday life. We also know that there can be the fear of a catastrophic health event, with feelings of annoyance and even anger that can ruin a (holi)day. We want to welcome and make room for these very real and human emotions that arise during times of stress.
I used to pretend I was perfectly healthy and was ashamed to ask for favors or receive differentiated treatment when in public. However, within my inner circle, I assumed that everyone should know by now what helps me stay healthy without my having to ask. When those assumptions went unfulfilled by my loved ones, I am disappointed and sometimes even angry. For instance, I may question their courtesy when they’ve chosen a table next to an open door despite knowing I am often cold due to my medications and underlying disease. When the Thanksgiving table is only full of dishes that are fried foods, or cheesy high-carb meals that I cannot eat, I get mad. Most people with chronic disease recognize these feelings. However, if I’m treated with cotton gloves and not even offered a slice of cake, I get angry too!
Like most holidays, the pressure to be joyful and engaged may be tough, but especially when our physical health impacts our mood or how others react or treat us. It can be hard to focus on the positives when symptoms act up or interrupt our plans. I believe in enjoying the NOW, since it can be so easy to think about what should have happened or the uncertainty of the future and what’s to come. This feeling is extra important when we are living with a chronic disease that requires careful planning and which often brings feelings of fear, or guilt of feeling burdensome. This year, I hope we can avoid those feelings even for a day. My wish for all of us is to embrace the present, be thankful for what we have, thankful for what we’ve accomplished and to spread the kindness we wish to see in ourselves and in the world.
We want to continue to celebrate our FamilyforLyfe throughout the holiday season and beyond. Ultimately, the friends, family, neighbors, and caretakers who care and love so much, are creating a kinder and better world to exist in for those of us living with chronic illness. So on this Thanksgiving, we celebrate these loved ones!
Family comes in all shapes and sizes, and we want to hear about for whom in your life you are thankful. Consider posting a picture of your own #FamilyForLyfe and remember to use this hashtag and link us in too! (#Lyfebulb) FamilyforLyfe is about bringing together a community of those living with chronic disease and the ones who look out for us.
I wish all of you a lovely holiday filled with the things that make you happy and thank you for being part of our #FamilyforLyfe.