Chapter 94: Living with Invisible Illness
Shari Fleming Photography
Hello Lovely Readers,
Although I’ve written many blog posts about my experience going through an unexpected cancer diagnosis, surgery, and treatment, I’ve written very little about my more recent reality: Living life with a chronic, invisible illness.
Over the past 20+ months since my diagnosis, I’ve expected things to go one of two ways. One- a slow (or not so slow) decline into death. Or, two- an abrupt improvement to my old version of normal after some sort of miraculous cure.
I never really considered option three- living my life with a chronic illness. But here we are.
Now, I’m beyond grateful to still be alive. However, I wasn’t as mentally prepared for this possibility as I was for death. This may sound crazy to many of you, but remember, I work in medicine, the field of life and death. I practice Buddhism, the philosophy of life and death. I do not fear death, I see it as a very natural part of life. Not an ending of a book, just an ending of a chapter.
Death is easier for me to logically comprehend than living my life as a new version of myself, a version with chronic illness.
So, I have chronic illness. What does this mean? When do I get to go back to normal?
I want to compare how this feels to something we are all a little too familiar with these days: COVID. Remember nearly two years ago when we all had the hope of things “going back to normal?” Oh yea…that…
Cancer patients have this hope too. We think, Maybe if this treatment works, or the next scan is clear, or I’m told I’m in remission, or I’m told my disease is stable, or there’s a new miraculous treatment, or I wake up from this terrible nightmare, then PRESTO back to normal!
Now, remember when COVID didn’t stop and things didn’t go back to normal and the new definition of “normal” became better defined as “the past?”
Yep, that’s the feeling people with cancer have all the time. There is no back to normal, there is only what we have now and this is a hard thing to process.
So, here I am- a 30 going on 75-year-old- realizing that there is not back to normal for me. Not today, not ever.
Instead, there is life with chronic illness. There is a life ahead with daily medication, frequent scans, doctor appointments, fatigue, worry, and the high possibility of developing various unfortunate symptoms at a moment’s notice.
My new normal example #1: I spent more time than I care to admit trying to find a “cute pill organizer” on Amazon. A near impossible feat, but I was the victor!
My new normal example #2: I spent a few nervous days biting my nails and debating if I should submit disability paperwork to my employer in case I ever need accommodations for my illness. In the end, I turned in the forms and spent the next few days biting my nails debating if I should share this publicly.
Clearly, I decided that yes, indeed I should. I have cancer. I have a chronic illness. I have a disability. I am incredibly lucky that my disability does not yet impact my cognitive function, my ability to practice medicine, my ability to write, speak, or read. But, it does impact me in other more subtle ways.
Many people who have experienced traumatic brain injury (TBI), including brain surgery, experience a type of fatigue referred to as cognitive fatigue or neurofatigue. Cognitive fatigue feels a bit like physical fatigue, but not quite. It is a difficult symptom to explain, and therefore, an incredibly difficult one to study and treat.
My best understanding of cognitive fatigue is this: A brain that has been through a traumatic injury uses more energy than a non-traumatized brain to process challenging cognitive problems, emotional situations, and sensory processes. I am not a neurologist or any type of medical expert on brain pathology, so this is simply my limited personal understanding of a mix of small research studies, case reports, and subjective information available online.
When you get home from a full day at work, you are likely physically tired and a bit mentally drained. Cognitive fatigue is feeling mentally drained to the extreme.
A few fascinating studies have looked at this concept through MRI imaging technology. One study used fMRI (functional magnetic resonance imaging) to assess cognitive fatigue in persons with TBI. This study found evidence that while performing a cognitive task, TBI participants showed increased brain activity. Although more studies are needed, this may indicate that increased cerebral effort in traumatized brains may manifest in the person as feeling cognitively fatigued (Kohl et al, cited below).
For me personally, I notice this significantly in situations with intense sensory stimulation or when I don’t get enough sleep. Going to a concert with booming bass and bright lights makes me feel like I am running a marathon while simultaneously taking the MCAT. Working a late evening or overnight shift is out of the question unless I have a full weekend to reset my brain back to neutral.
Although I continue to work full time, I am much more mentally drained after work than I was pre-brain surgery. After a long, cognitively draining day, when my partner asks me what I want to watch on Netflix, he may as well be asking me to recite all 50 state capitals. When my friends text me questions about plans for next week, they may as well be asking me to solve a calculus equation. Luckily, I’m fairly confident that I can name most state capitals and solve a calculus equations with a bit of time, but I’d rather not.
So, sometimes I have to tell my partner, “You pick the show tonight.” Sometimes, I can’t text my friends back right away. Instead, I wake up the next morning with a fresh, reset brain and I say “I’m sorry I missed your text. Let’s talk now.”
After nearly two years, I know what my brain can do and what it cannot. However, I didn’t fully understand until recently that this is my new normal. This chronic, invisible illness hasn’t killed me, but it has taken away the version of normal I thought I might return to someday.
I’ve decided that’s ok. This new normal- this normal with a highly functioning but sometimes tired brain- is just fine with me.
This new normal includes medications, doctor visits, frequent MRIs, a badass head scar, an unexpected but chic pixie haircut, a growing community of cancer thrivers and survivors, a blog, a book, motivational speaking events all over the world (via zoom, thanks technology), and most importantly, a perspective that helps me relate to and empathize more with my own patients. This new normal, the one with chronic, invisible illness/disability is a new normal that I’ve grown to love.
In summary,
1) Advocate for yourself.
2) A chronic illness or disability is nothing to be ashamed of. Know your limitations and love yourself regardless of them.
3) Remember that many, many people in this world are experiencing invisible illness/disability. Just because you can’t see their depression, anxiety, social injustice, poverty, hypertension, diabetes, heart disease, cancer, fatigue (ok, you get the point), does not mean it’s not there. Have grace. Shift your perspective. I’ve found it’s best to assume everyone is facing an invisible illness than to assume otherwise. We are all fighting battles that others cannot see.
4) If you can, share your story. Raise awareness. Being normal is boring. Be the change.
Thanks for reading. Ok, now my brain is absolutely fried. If you text me this evening, there’s no way I’m responding :)
Fondly,
Courtney
©CB2021
Kohl AD, Wylie GR, Genova HM, Hillary FG, Deluca J. The neural correlates of cognitive fatigue in traumatic brain injury using functional MRI. Brain Inj. 2009 May;23(5):420-32. doi: 10.1080/02699050902788519. PMID: 19408165.