IS BEING AUTHENTIC ALWAYS BETTER?
A CASE FOR INVISIBLE ILLNESS
I’m doing a video project on social media called: Share Your Heart, Show Your Work. It's a Facebook Live video challenge that is 10 days long. In the process of doing this challenge, I've uncovered a few things about my personal take on authenticity, and how I've dealt with my invisible illness throughout my twenties.
It's Day 1, and my first prompt is: ‘Why are you doing this challenge?’
I realized that the first thing people need to know if they want to understand me, is that I have a medical condition that has radically altered the landscape of my life. The path of my illness has been so far reaching, that without understanding my illness, you cannot understand me, or the work it’s led me to; they are inextricably linked.
In my Day 1 video, I delved into the topics of invisible illness & being authentic. I spoke longwinded-ly about how in this challenge, my aim is to bring authenticity to my work in my online business. Yes, my business is authentic, but it's hard for personality, tone of voice, and body language to come through via a Facebook post. On my video, I announced my goal for the #SYHSYWlive challenge is to have my online people know me the way people in real life know me.
How could they know me if they didn't know about my illness that had drastically changed my life? My illness that had caused my Near Death Experience, that had caused me to accept my psychic gift, that had caused me to change careers and become a woo-preneur?
And since I was thinking about things, did people in my real life even know me? How could they know me if I hadn't been honest about my health condition for the last 13 years.
As a woo woo junkie, self-improvement-loving, yoga-fied lady, this was concerning. You should always be authentic in life; or so the woo goes.
So why had I felt the need to remain closeted about my illness for the last 13 years?
Not Quite a Lie
The last 13 years haven't been a lie, so much as the topic never came up. I was well enough during this time to blend in with people who didn't have a disability. I was able to function at work until 2011, so I didn't see the point in bringing it up.
During the process of reflection for doing my challenge video, I realized that only 4 people, yes, just 4 cause I counted them - only 4 people in the course of this 13 years, had actually seen the full extent of my illness. If you think about how many people any given person meets in 13 years, in work, school, volunteer jobs & internships, clubs & hobbies, it’s kind of miraculous that literally only 4 people saw the extent of my condition.
Yet, that's the truth, and here's how it happened and why I don't feel bad about concealing my illness.
How did I go so long, without people being aware of my illness, or me making others aware of my illness?
One reason for this is that I traveled extensively in my twenties. Moving every few months for years on end literally, as a flight attendant & otherwise, it’s easy to see why I didn’t ‘go deep’ in a lot of my interactions. If I didn’t have any time to build rapport with close friends, why would I tell my personal medical business to aquaintances? It’s simply not very appropriate in conversation, and I didn't see it as anyone's business to know my personal medical history.
During this time, only one member of my family saw me disabled by my illness. I barely went home in ten years, and when I did, my back wasn’t actively ‘out,’ so my condition was easy to minimize.
When I missed work, about once a year, it was easy to say, ‘Oh, it’s no big deal, my back just went out, I’m fine now.’ I brought in a Dr’s note to work, and that was that. I stayed home & inside the house flat in bed alone.
No one could see that I was literally hunched over like an 80 year old man and in excruciating pain.
And I wanted it that way – I didn’t want to have others feel sorry for me.
Often times, & I’m sure you can relate, I’ve heard people in the workplace, and people in society in general, complain about people who have ‘back pain.’ They are seen by a lot of people in society as whiners, cry babies, and losers who ‘just don’t want to work’ and 'want to sit around and collect disability.’
I wasn’t any of those things, and I loved working because it afforded me my independence in life. You can see why I didn’t want to be associated with that stereotype.
So even though I have the amount of discs herniated in my back that would put a construction worker flat on his ass, for LIFE – I don't get the feeling that people have respect for the journey that I've been through when they ask me about it. At best, people blink confusedly, and then ask another 20 questions. It's exhausting.
As a result of my genetic connective tissue disorder, I have 50% of my spine that's degenerated. I have 11 disc herniations, along with other spinal abnormalities.
To put my condition in perspective for you, 2 spinal disc herniations is enough pain to put a guy like this on disability for life. I have 5x that amount of herniations; 5x that amount of pain.
The only other person I know of, with the amount of spinal degeneration as me, spends considerable time in a wheelchair.
Yet, when I talk to people about my illness, they simply hear, ‘back pain whiner-whiner’ in their mind, and group me into the ‘loser who doesn’t want to work’ category, while I’m still talking. You can literally FEEL the judgement coming from every pore of peoples being if & when I try to explain my illness. It's very frustrating to be constantly asked about my health, yet receive no understanding, no respect for my pain, and on top of that, to be belittled by others because of my condition.
Let's Get Real -
The truth is, that I've minimized my illness and actively hid my illness throughout my twenties on purpose. Who could blame me? I don't feel shame or New Age Guilt (NAG) because, I, like many others with invisible illness finds it easier to NOT be real. The fact is, that having a disability is plain awkward. In daily life, talking about your disability is one sure-fire way to make everyone around you uncomfortable, not to mention, it can jeopardize your employment. There are very real reasons to NOT be real about your illness..
I was fired for requesting a reasonable accommodation
At one point, I was actually fired for requesting a reasonable accommodation for my disability. All I needed was a simple stool, so that I could get down to floor level easier at the Montessori school I was working at. Despite being very healthy, and actually a yoga instructor at the time, the repetitive squatting, all day long - every day, as a teacher’s assistant was killing my knees. I’d never had knee problems prior to this, and haven’t had them since, but the ridiculous amount of squatting, which is required by Montessori as per their teaching methods, as per my boss, required me to squat probably 40-70 times per day. The owner of the school refused to let me use a stool to save my knees, and I was fired. I had been given the ultimatum, that I could either do the job without a stool, or I wouldn’t be coming back to work.
I was dumped by my fiance
It was the Fall of 2005 when I was fired, and I didn’t know it then, but three months later, on New Year’s day of 2006, my fiancé would be dumping me. He cited my genetics as one reason for this. He didn’t want his children to suffer the way I had, and he didn’t want to have this condition in his ‘family line.’ (Yea, he actually said that out loud). I was devastated. He was 1 of only 4 people who saw the reality of the amount of pain & disability that I went through daily, and I was rejected for it.
I was ostracized by my local Community
Now, I can’t say that woo woo people everywhere are like this, as I’ve only recently ‘come out of the closet’ about my illness. I currently live in a very tiny town, where honestly, you can find some great people, but the woo woos here, I’ve found can be quite judgemental of my medical condition.
In my attempts to be honest and authentic with people here about my illness & disability, I’ve been met with hostility, denial, blame, demanding questions, politics, anger, rumors, and finally - copious amounts of super judgey and unsolicited health ‘suggestions.’
I’m viewed as someone who’s mind is ‘negative’ and ‘low vibrating,’ because I’m not able to overcome my genetic illness with my mind. Keep in mind, that Down Syndrome is also a genetic illness, yet we would never suggest affirmations to overcome Down Syndrome.
Turns out New Age Guilt is a thing - and I've experienced it's shaming first hand.
I would throw authenticity out the window in a second, if it meant that I could pass for normal, and be able to work like I used to.
If there were a way to conceal my illness FOR-EV-ER, and never have to tell ANYONE about it, or to simply just get better and feel better, it’d be a whole lot easier for me, than trying to explain my life to people who will never get it & keep judging me on-the-daily.
The only reason I've come out about my illness, is that I could no longer conceal it. That happened in 2011, when I was forced to quit working, and then again in 2014, when I became bedridden by my illness.
It's disheartening to be judged by ‘mindful’ people. So yea, that hurts. I can’t dwell on it though because it'll just bring me down. I can only hope that this is a phenomenon known only to this tiny desert community I live in.
You thought I was a woo-preneur, and authenticity is like breathing to me?
Naw, not really. Like most things woo-related, or self development related, it’s a journey. It’s NOT easy all the time to be authentic, and sometimes there are very good reasons to NOT be authentic in life.
Each person must discern for themselves, their path to the most freedom and ease in their life, while balancing that with their need for personal integrity as well.
Do I Regret not being honest?
I can’t say that I regret not being honest with people in my twenties about my illness. After all, not being authentic about my illness allowed me to ‘pass’ as normal in society, escape judgement & rejection from peers, and probably saved me more than one job by my employer NOT knowing I was disabled.
By NOT being authentic about my illness, I enjoyed 8 years of a virtually normal life. I got to ‘blend’ in with people, and talk about normal topics socially, without my time with friends being ruined with the never-ending barrage of questions about my illness.
I don’t enjoy being singled out, nor being the ‘center of attention’ because of my illness. Honestly, it makes me feel like a freak. I really, REALLY hate being put on the spot in front of groups of people and asked about my illness.
Let this be clear: When I’m out and about with friends, and I’m enjoying a pot luck, or a beer, or walking down the road, or at a drum circle, the last thing I want is to talk about is my illness. I can’t speak for others with invisible illness, but definitely, this is how I feel. I don't want to discuss, in essence, how strange I am from everyone else, or what is 'wrong' with me.
Despite being bedridden for the last 2.5 years, I’m THANKFUL for what my body CAN do. I focus my attention in the moment, at this very event that I’m enjoying with friends. I’m SO thankful to be present, and doing something with friends, I'd prefer not to ruin that blissful moment with ‘authenticity,' because I'm currently experiencing JOY.
If I’m asked about my illness, I’m truthful, but I do not want to linger on the topic of my health for others' gratification.
I CHOOSE to keep my mind on things that are POSITIVE. There’s no point in dwelling on something that I can’t change and neither can you. I don't want to discuss what's 'wrong' with me.
Acceptance is a powerful medicine, and part of the natural healing process of loss. Losing part of your health is something that if you cannot change, you must accept, and by extension, the people who know you must also accept in order to be friends. Lots of love, Kai -
Ps. Thanks for your concern, but please do not post health suggestions, diets, or supplements for me to take. Thank you :)