You see us walk by you on the street. We sit in front of you in the city bus. We serve you coffee at Starbucks. We are behind you in line at the grocery store. We are the nearly 1 in 2 Americans who have a chronic condition.[i] This chronic condition may be due to a diagnosed illness, mental health issues, persistent side effects due to treatment, or constant pain because of a car accident.
Our chronic conditions are invisible…but we are not. We walk by you on the street and you do not know that we just had blood work done to check inflammatory levels. You see us sitting in front of you in the city bus and you do not realize that we are on our way to another chemotherapy session. We may be behind you in line at the grocery store and you do not know that we regularly purchase take-out because our constant fatigue prevents us from wanting to cook dinner.
We may look perfectly healthy on the outside, but our depression rate is 15-20% higher than the average person because of our chronic illness. [ii]
According to the U.S. Department of Health and Human Services, about 157 million Americans will be afflicted by chronic illnesses by 2020. That number is estimated to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million.[iii]
I was 17 years old when I was first diagnosed with a rare, invisible and incurable illness called central nervous system vasculitis. This is when my immune system attacks the blood vessels in my brain and can lead to a variety of neurological symptoms. The invisible illness in my brain started with thundering headaches. My family doctor passed them off as normal migraines. Afterward, I started having language difficulties; I picked up a book and I could not read the words. Later that night at the hospital, my brain slowly deteriorated and put me in a coma for a month.
If my doctors hadn’t been as competent and proficient in my diagnosis and treatment, I would have died.
However, surviving death was a minor hill compared to the mountains of challenges ahead of me. Trying to find a new sense of normal after my body had forgotten to walk and talk was the highest mountain to climb. I was learning baby steps like a toddler walking for the first time. I couldn’t voice my feelings. Instead, nurses came and showed me a “happy face” sign and a “sad face” sign. “How are you feeling Chelsey? Point to which one you are feeling today.” Words were scrambled in my head. It would be a while before these thoughts can express coherent words.
I am fortunate to be living in a period of advanced medical research because it wasn’t too long ago when this illness was only diagnosed post-autopsy. I have been privileged to have access to the treatment I need so I can live as normal a life as possible. I have graduated from university. I have volunteered in third-world countries. I have worked at jobs trying to pay off my student loan debt.
My body may go into remission – but as I learned six years after my diagnosis, it can flare up with a fury and overwhelm my life again.
Shortly after I got married in 2011, my illness returned with severe non-stop seizures and terrifying hallucinations.
Every time my immune system attacks my brain, I need to be treated immediately – usually with the combination of chemotherapy and steroids. Without such treatment, I would die or become a vegetable.
My invisible illness is caused by my own immune system. It can creep up on the blood vessels in my brain and spread like wildfire in an instant. To the naked eye, I may just seem confused and disconcerted. Take me to the ER for a brain scan and you can find blood vessels ready to burst because of inflammation.
No one could guess I am sick unless I tell them. People find it hard to believe I am on chemotherapy when I still have enough hair to tie in a ponytail. People cannot recognize that the immune system – the so-called protector against viruses – is also my worst enemy. Until there is a cure, I will always be at risk.
The difference between me and half of the American population is that I live each day with an invisible enemy…an illness that daily taunts me with symptoms and eager to rip apart my future.
From September 10 – 16, join us in National Invisible Chronic Illness Awareness Week. With more people joining our cause, our voice can be stronger. With a louder voice, we can be heard even if our invisible illnesses cannot be seen.
****Are you on Facebook? Join the cause here for Invisible Illness Week.
To find out more about this week and how you can contribute or what you can learn, find out here
[i] Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update). "Chronic Conditions: Making the Case for Ongoing Care".
[ii] Rifkin, A. "Depression in Physically Ill Patients," Postgraduate Medicine (9-92) 147-154.
[iii] Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update). "Chronic Conditions: Making the Case for Ongoing Care".
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