Illness Preception
When someone thinks of disability, they often think about the visual disability—the ones you can see. Thankfully, through social media, blogs, forums, celebrities, etc, we have seen the impact of disabilities without visible form. These are the ones that affect individuals' mental and physical capacity to participate in life as we usually would.
I am among those who have more "invisible" than "visible" chronic disabilities. If you saw me, you may suspect something is wrong, but maybe you couldn't pinpoint it. Although my list may be extended and exhaustive for someone my age, I don't think my age affects my mental capacity to perceive these illnesses as neither helpful nor unhelpful; they just are. I accept my body as it is.
All of that being said, these illnesses have a common theme- chronic inflammation of either organ function, nerve function, or muscle function. These affect my ability to complete daily tasks, my routines, and how I can show up or not show up every day. Some days are better than others, and I've learned to lean into the good days and not give myself too much hell for the bad ones. Sometimes, a comfy couch and cuddles with my pups and pajamas are the only things that will get accomplished, and that's okay.
Permitting myself to rest is a very new idea for me. I used to be of the mindset—all or nothing. I would put my all into each new and ongoing task or do nothing and play what I thought was cheating on my responsibilities. But was it cheating, or did my body need more rest than I allowed? Pushing beyond my limits, both mentally and physically, just made all my symptoms and issues flare up even more, causing me to have a forced day of rest. These forced rest days would accumulate to weeks of recovery and then send my mental health into a downward spiral of despair, believing I was not measuring up to what "everyone" else was expecting.
Who is "everyone," and why did I feel so much pressure to compete with the world when I was suffering and no one could see it until I crashed? Why did I believe this was the healthy way to be productive, and how did I allow hustle culture to dictate my ongoing battle for ultimate productivity? Good question. It's the ultimate question; it took me years to figure out the answer.
The answer will be different for everyone. Some may believe their culture, parental figures, or authority figures applied pressure to be or become their "best self ." Others may say it was an inner drive for what society claims is success, fame, and fortune. While many of us may say, it may be a combination of everything.
My journey to a genuinely healthy perspective of my needs, values, and priorities happened during COVID-19, as it may have for many. I had no more distractions, no more connections to maintain in person, and no duties outside of the house, and I was alone with all my thoughts. For the first time, I had to reevaluate who I was, what I wanted, where I was going, my honest and imaginary obligations, the why of it all, and how this affected me on a deeper level. Most importantly, where am I putting energy that stresses me more and causes unnecessary issues? Stress, as we all know, can cause chronic symptoms to flare up and even cause new problems to arise.
After years of deep introspection and reflection, I am still trying to find the perfect balance. I am not sure that will ever happen; as life moves forward, my illnesses evolve, and I need new treatments to meet new needs, this balance between what is necessary and what I want to do will always be in flux. Instead, starting with those critical questions and putting in the hard work to find the core of why and who you are is an invaluable tool to help you during those times of flux. I have to learn the internal balance first. What I can control, like my perception, self-love, self-care, and self-preservation over what I can not- like my body, the symptoms, and how I feel that day.
