Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
I do understand.
Since 1998 I have been living with HIV, a socially marginalized disease — but that only partially prepared me for living with MEcfs (since 2012), a medically marginalized disease.
My medical care experiences between HIV and MEcfs could not be more traumatically stark.
With HIV the standard of care is life saving medications.
With medically marginalized illnesses like:
...the standard of medical care often is denial, dismissal and gaslighting.
Unfortunately, this can also be our experience with other health professionals like physical therapists, nurses and psychiatrists.
Worse yet, our partners, family and friends can doubt the seriousness (or existence) of our illnesses adding to the trauma, loss, feelings of betrayal, and feelings of being unsafe.
It can be challenging to find a safe space where someone understands from lived experience what it's like to live with a medically / socially marginalized chronic illness.
That's why I've focused my counseling practice to work with people living with illnesses the medical system mostly dismisses or denies.
Chronic illness impacts much more than only our physical health.
The loss that comes with a disabling - often invisible - chronic illness extends beyond our sick bodies to our careers, our finances, and relationships with our partners, family and friends.
And our relationship with ourselves. We can lose our sense of identity, our sense of purpose, our independence, and our trust in doctors.
We can feel like we've been betrayed by our bodies and by medicine --- and sometimes by those that love us.
We may experience depression and anxiety and 'brain fog' and other neuropsychiatric symptoms caused by the effects of inflammation in our brains from chronic illness.
With the trauma that often accompanies unwanted and uncontrollable chronic illness, it is normal that losing one's health, mobility, job, etc can exacerbate depression and anxiety and other mental health symptoms.
Being sick and disabled with a serious chronic illness - especially one that the medical system mostly ignores - makes nearly all aspects of life harder.
Unless they've lived with symptoms and suffering for months and years, it is nearly impossible for many people to truly understand how deeply chronic illness impacts our quality of life.
I get it. I'm living it.