Can Any Good Come From Chronic Illness? Guest Blog By Ari CubangbangMay 30, 2022
(the audio at the top of this blog is a narration by Ari of the text below. This audio version is for those people who prefer to listen than to read)
How I Came to Eleanor Stein’s Group
I was struggling with pacing and dealing with my diseases. A therapist I was seeing at the time referred me to Dr. Stein to join a group and see if her group would help me to cope better. The group setting was warm and welcoming, and I found myself being heard and understood. I felt as though I belonged. I learned through the groups how vital pacing oneself is. I stopped trying to overload myself with work and stopped pressuring myself to keep up with those in my life who were not chronically ill. I began to make more detailed lists of things I needed to do. When I had a little bit of energy I would go and do one or two things on the list, and this helped me to get things done. I also cope much better with what life throws at me. Living with chronic illness has made life challenging but now I feel I have tools to cope better, and I am forever grateful for being referred to the group.
Can Any Good Come From Illness? (are we even allowed to ask this question?)
I am living life with my diseases. Living with any disease is complicated. Life with illness is not something I would wish on anyone. There is hope in being ill; it doesn’t have to be all bad. Being chronically ill has a refining effect on our souls. Being sick makes us come to the realization humans are flawed; we are imperfect. We have things we may not like about ourselves, and it gives us the opportunity to refine ourselves as a person.
Finding Out Who My Real Friends Are
When I first got sick, I was focused on the grind, the grind of working, the effort of trying to save up funds to go to university. Trying to plan my life fell short as I didn’t plan to be sick. Through the hardships of life, I needed to work on myself. The illness made me see how I was affecting others. Perhaps it is a bit ableist towards me to think I caused others discomfort because of my condition, but illness showed me genuine and fake people. My disease showed me this by those who came to my aid when I needed help, these people were and are genuine. My disease showed me the ableist side of people who began to judge me for being sick or pushed my illnesses aside as though they did not matter. The disbelief and the harsh comments showed me people I thought were true friends were actually fake.
Finding Out Who I Am
Being close to death changed me - it made me realize the important things in my life. I no longer do what others want me to do with my life, I do what I want to do for me. I started going to school; I started living my life when I got sick. Why do we often wait to live our lives until we are at deaths door?
Can You Still Do What You Love If You Are Severely Ill?
I want to live my life. Illness taught me to live, cancer taught me I should have died, but it gave me a second chance at life. I am in a bubble. Even though I live a bubble girl life, I am grateful to be alive. I have MCAS, Ehlers-Danlos, HyperPOTS and am a cancer survivor. The disease will never take the art from within me. It will never dampen my love of being creative, whether through writing or creating fabrication from fabric while I design costumes. Life does not have to end when we are sick. We are still human, and we often stop doing the things we love because we are depressed. Some things have to change; I needed to change my costume approach. I can not make costumes that use fake fur. I must preserve my health and use materials I do not react to.
Can You Be Happy With a Chronic Illness?
What are things you love to do? Is it something you can do differently and still find joy in life? Living with illness means finding happiness again. It means seeing things you know you are capable of, focusing on them, and focusing less on what you can not do. I have many diseases, I nearly died from cancer, but I still have the drive to live life. I am not dead yet. I am sick, but I have hope. I have hope to change the narrative around illness. To show people who are not ill that we have dreams and aspirations and our dreams are just as important as others.
Do Not Give Up on Yourself
Do not give up on yourself and close yourself away from the world. Grieve for the loss of the life you had before you were ill, but remember to live. Remember, you are worthy of happy memories. You deserve happiness like the rest of us. Life is lonely for me; I have no visitors come to see me because of the severity of my illness, but I am still living. I still write, draw, and create worlds for myself on pages of white illuminated in black text. I am living. I am living a life I always wanted. I am making things and haven’t been happier than I am now. I do not pity myself or get lost in self-loathing. I have my down days for sure. I aim to be a better me—someone who will continue to live no matter what comes my way.
You Got This
The reality is disease is hard, but we do not need to stop living. Find those little things in life which bring you purpose or joy. Grasp them tightly, for those small things are the beacons of hope you are sending off into the universe for yourself to stay centered and to find joy again. Remember, you are worthy of living your life in illness. You are worthy of love and respect. After all, you are the only you, and you know what is best for you to get you through anything you face. You got this. Keep pushing forward, rest, relax, remember it is ok to be resilient. Celebrate the small victories of getting back to the pieces of yourself you may have lost long ago. Allow yourself to feel good and the bad, but do not live in the wrong moments. Healing our minds is how we can continue to carry on. What is something you can do for yourself? What is something that will bring you joy this week?
Ari Cubangbang is an artist that has been published in magazines, anthologies for both artwork and writing. She is a fiber major at AUArts. She has been creating artworks since I was five years old. Both sets of her grandparents had farms and no cable, thus she learned at a young age to manage her time in a crafty way. She is rooted in fiber yet loves to practice painting. She says "there is a soothing affect being able to express the positive and negative nature of our memories, concepts and reality with the stroke of a brush. I aim to shift social perceptions, be the vehicle for the unheard and share stories of memories lost."
Ari can be followed on the following social media sites;
Youtube: Ari Unplugged - YouTube
Blog: Surviving Chronic Illness
Why I invited Ari to Create a Guest Blog (by Dr. Stein)
Ari has been attending groups in my medical practice for several months. One day in group we were discussing creativity and Ari sent me a link to her website. I was blown away by how she is expressing herself despite her multiple diagnoses and homebound status. It is an inspiration and an example of how the human spirit can overcome adversity. I asked her if she would be willing to share her wisdom with others. She agreed and here is Ari’s guest blog.