Being Sick Is Making Me Crazy (But Don’t Tell Anyone)
I have a theory: All truly sick people have mental illness.
I’m not saying that people who have physical diseases are crazy. (Although some of us may or may not be convinced that Jack Black is the sexiest man alive, but I’m not naming names.) Yet, I do believe there is no way to escape the mentally exhausting ramifications of dealing with a chronic illness.
So, yeah, I think sickness is making us all a little crazy.
Mental warfare is an uncharted and often ignored symptom of living with an inescapable illness. That’s just a fact. This is not something I would have said even a month ago. As terrible as it is, most “sick people” constantly have to defend the fact that they’re “sick people.”
Defending yourself against doubts is a symptom of having an incurable illness that cannot be seen on the outside. They don’t tell us that when we’re diagnosed.
I am not a doctor, nor have I done extensive research on the subject. But I would almost bet on the fact that even the sickest of the sick — those of the “Sweet November” and “Autumn in New York” storylines — have had to deal with this, too. Even publicly lauded patients get chastised online for how and when they do treatments, what they eat, and onward.
We believe what we see, and we rarely have the capacity as humans to trust in what we can’t. Of course, most of us know that how we look rarely ever denotes what our actual insides, results, and reports represent. Still, society is a fickle mistress and one with very little sympathy (autumnal-themed movies excluded, of course).
No one with a long-term illness wants to be labeled as dramatic or delusional, so most of us avoid the sentences I’ve used so far in this column.
Think about it: The statement that “all truly physically sick people have mental illness” makes perfect sense. There is no way that any one of us can go through this process — the traumas, the tribulations, and the treatments — without coming out scarred in more ways than one. For culture, care teams, or even our communities to believe otherwise is literally crazy (#onbrand).
But here is the most important part: By distinguishing between physical illness and mental illness for more than half of this column, I am committing the worst offense of all. I am implying that mental disease is somehow less important than somatic disease, and that is simply wrong.
Being sick for the long term comes with a variety of symptoms and challenges we may never have imagined. Defending yourself is one of them. Replying to “But you look so good” with “Thanks, it’s called makeup” is another. (Men, you’d better become allies fast and start using this reply, too.) And gradually developing psychological lacerations is the biggest challenge of all.
I confess that although I am about as mentally healthy as any human can be (Jack Black dalliances notwithstanding), and have never been treated for a mental malady to date, I am human. And by being human, I feel things. And by feeling things, I will never be entirely emotionally perfect because, well, there is no such thing.
I’m sick of proving how mentally awesome I am in order to get better patient points, or of showing that “I am the healthiest sick person ever! Look at me! I can handle being sick with grace and a smile!”
Yes, I am a pretty chill person. Yes, I will always treat my care team with care. Yes, I want nothing to do with my illness, nor do I consider it a large part of my identity. In the world of sick, I have a lot of world outside my sick world, and for me, that keeps me pretty healthy.
But none of us can be happy all the time. None of us can be unwell “well.” So, we need to stop judging patients on their normalcy in dealing with abnormal things — because it never will be “normal.”
If we could drop the stigma about mental illness, perhaps then patients of all types could stop defending themselves and start healing instead.
I was depressed this week. That was a symptom of sickness.
I was anxious this week. That was a symptom of sickness.
I was whole and happy this week. That was a symptom of me.
My first talk therapy appointment is next week, and I’m ready for it.
What about you?
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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
Comments
Michael Dix
So much love and respect for you, and your theory seems spot on! I love your thoughts, so heartfelt and thought out!
Harold A Maio
----If "we" could drop the stigma about mental illness...
That starts with you.
Drop it.
Bailey Anne Vincent
“By distinguishing between physical illness and mental illness for more than half of this column, I am committing the worst offense of all. I am implying that mental disease is somehow less important than somatic disease, and that is simply wrong.” Calling out my own implicit bias was in fact part of the intentional journey of this article. I am sorry if you did not understand this column, but I will not stop advocating for mental health awareness, because if we don’t dialogue about it - and call out our own misnomers and learning curves along the way - stigma will never go away. Thank you for your opinion
Mark Tremblay
Hey Bailey, I whole heartedly agree with much of your article. I am an older CF patient that has struggled with the emotional burden of CF for nearly 50 years, has an advanced degree in psychology and spent many years studying this topic including publications and presentations in the late 90s). In fact, there are many psychological theories and constructs that suggest that the psychological and emotional development of terminally ill persons with long-term chronic illness may be altered. First of all, we know that repeated trauma refocuses the brain from abstract pursuits to the more concrete fear-based pursuit of survival. Additionally, we know that neurologically people who experience chronic fight or flight (sympathetic nervous system activity) have long-term consequences: heightened startle response, heightened galvanic skin response, catastrophizing thoughts etc. a phenomenon most dramatically observed among civilians in war torn areas. Also, the psychological and emotional impacts of trauma are worse for victims than for war fighters. The theory is that fighters have a more active role and therefore have greater influence over their traumatic experiences whereas young children for example are nearly always victims in those situations with little or no ability to play an active role in the situation. That said, children with CF suffer on a daily basis with a threat that is far beyond their ability to control, randomly and concretely endangers their life, and does so over an extended period of time which is why I believe when I studied the prevalence of depression and anxiety among CF patients we found them to be four times that of the non-sick (including symptom matched controls) population. Unfortunately, I stopped my research in 1998 because a super infection forced my hand and I never went back because the topic was well quite frankly depressing. However, as a person with CF that is just about to celebrate his 50th birthday I feel the most pressing issue in CF care other than finding a cure is better understanding of the psychic and emotional sequelae of this disease on infants, children, young adults and even old timers like me. My hopes are that we can improve the CF care paradigm and models so that we more fully engage, collaborate with, and support the wounded patients who lived all or most of their in the hourglass waiting for the sand to run out in war torn villages where the doctors battled a horrible enemy that happened to be inside of us.
Bailey Anne Vincent
This is fascinating!!! Thank you for all that insight into your research and for taking the time to share