Tuesday, January 22, 2013
Living with chronic illness and secrets seem to go hand in hand. Not everyone needs to know our business and for survival and personal protection, it's in our best interest not to be sharing our life history with just anyone. I don't believe it's healthy to be willing to share anything and everything with anyone. It opens you up for any kind of unnecessary hurt that could easily be prevented with discretion and judgment.
It's off putting when someone unprovoked dumps their medical history on others. It makes you stop and wonder what that person's end game is, what's their ulterior motive. It's just in bad taste. It's fine to share with others but we need to be careful what we share and with whom. My policy is that I only share what's relevant with those I trust and that's going to vary from person to person.
My husband is the only one I've dated that knows absolutely every single detail about my health, I'm as open with him as I am with my parents. I'm very open with my parents as they guided me through all my health issues and are able to relate to my issues and needs. Some past boyfriends new some about my health, some more than others but even the former boyfriend who I had plans with to marry, didn't know every detail. One must be careful even with persons thought to be trustworthy, sometimes that perception is merely a facade.
I'll freely discuss any aspect of my health with others in the health circles for support, education and bonding. One of my friends within those circles knows the most out of everyone I'm involved with in the health circles. I'm not avoiding giving details to anyone else, it just hasn't necessarily been relevant for discussion and of course not everyone is as easy to share problems with to commiserate with one another.
Another area though that requires discretion is the work field. There are so many employers who will use any excuse for getting rid of an employee, even if it absolutely has no bearing on one's work performance. Many employers, once unhappy with an employee, will begin to devise a strategy to be able to end the employee's employment with the company. Whether it's gradually increasing workload, adding new responsibilities and duties to build a case for reprimanding an employee to inevitably forcing a decision from the employee - quit or be fired. Not only that but other coworkers can be just as devious. My point is, even people you think you can trust, you can't necessarily trust and you don't want to allow others to use information you've volunteered against you one day.
It can very trying though at times to bite your tongue and not share with another person. I work in the medical field and although I don't have the same medical diagnoses as the patients I work with, I can personally relate with symptoms my patients report. Fatigue, stomach issues, diet considerations, medications, weakness, pain, fear and anxiety, PTSD, etc. They're all symptoms and issues that are typical among any group of persons with any chronic illness. Each illness will have their own symptoms and issues, but there tends to be a base set that each group can relate to. It is this commonality that makes it hard for me not to share my own experiences with patients. It's very frustrating and even insulting (although it's not the person's intention or even understanding) when someone tells you that you have no idea what's like to be sick, to have been in the hospital, to experience xyz, simply because you happen to look healthy. It makes me want to scream sometimes. I don't like to make assumptions about others because of just that. A person can look like anything, that doesn't mean there's nothing else going on - physically, emotionally, mentally, financially, etc. You just don't know. I'm not going to compare my experiences to anyone else's, but I've been through my share of personal hell - I don't need to compare horror stories with someone else to feel better about my own or diminish others. I do like my experiences to be acknowledged though for what they are - that you aren't the only one with a history. But again, it isn't appropriate for me to share my history with my patients, especially not in any detail.
No matter how many secrets we keep, there's always someone who has similar, if not the same, secrets. And the saving hope is that we each find that person or at least a person or two that we can share all those secrets without fear. Because although not everyone needs to know our secrets, it's also not healthy to keep them all to ourselves without sharing with someone. What are some of your secrets?
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.