Jae – Holidays with a Chronic Illness
Jae has a background in community health education and exercise science, and took to her education and training when she found herself with a myriad of chronic illnesses, including heart disease and autoimmune diseases. She now works to support those, especially women, who are just starting their journey and advocate for awareness, education and better treatment for those who are affected by chronic illness and autoimmune diseases.
My journey with chronic illness and autoimmune disease has been filled with beauty and pain. Perhaps the most beautiful thing that has happened has been my ability to use my experiences to help and encourage others and use my voice to bring light to issues that affect us. On the other side, the painful side, there has been much loss, pain and struggle that not everyone may see. And believe it or not, the holiday season brings some of that pain for me.
As many of us are preparing to travel to visit family and friends, make those favorite dishes that bring comfort and joy, I myself do not feel the excitement and joy. I have not been feeling well the past few months with several infections, which have put me into a cycle of flares, especially with my heart. My cardiac chart is complicated to say the least, and I honestly thought I had all my issues under control. For the past few months I have been pushing myself, and the bloodwork, EKG’s and Echo’s showed this in plain sight and not only was my heart taking a beating, but my kidneys have also been overworked as well. But was I listening? No! I had things that needed to be done but slowly I was breaking down and I could feel it. And within the past two weeks, everything has come crashing down. Recently, my cardiologist told me that I need to slow down, REST and really focus my heart health.
So when Thanksgiving snuck up on me, that joy and excitement of being with family were not there. I had to take pause and evaluate if I was well enough to participate in AND enjoy my family at this year’s dinner. And here is what I realized:
I cannot push my limits any longer. If I want any chances of really getting back to my version of functional, I have got to slow it down and take respite. I also realized that by practicing self-care and actually slowing down and resting, I then can work on presenting the lower pain, happier and more focused version of me to others at other events.
I contemplated how I would tell my family, especially my mom as she is the host this year. I thought of pushing through for sake of tradition, but that would not benefit anyone. Sometimes we feel like we will hurt someone when at the end of the day we will end up hurting ourselves more. That’s why boundaries are oh so important during the holidays. If you can’t do it, then don’t. If you can’t make it, oh well. Don’t hurt yourself trying to do things when you know that others won’t be there to help you if you go downhill. It has taken me until this year to learn this.
I called my mom and let her know I wasn’t coming this year and expected the wrath of God. She said okay and that she understood. She was actually concerned at this point and wanted me to rest. This whole conversation taught me a lesson of how important it is to set your boundaries and stick to them. It also taught me that it isn’t your job to explain why you can’t do anything, as you are the one fighting this battle.
So this holiday season, remember that your health, physical and mental, matters. No dinner, social gathering or anything should put so much stress on you that you feel even sicker than you do on a regular basis. For at the end of the day your health comes first!!