"Well look on the bright side of it,"
"...at least it's not..."
"you just need to choose to be happy"
"change your thoughts and you'll change your world"
"you have to want to get better."
Those of us who suffer with a chronic illness experience this dilemma all the time: do we open up about what we're going through, or do we keep silent knowing they probably won't understand, or even worse, they won't try to understand. It can be discouraging to open up to someone about what we're going through only to hear statements like those above. These suggestions ultimately tell us "I know how to cope with your illness better than you do."
Thinking positive isn't the problem. The problem occurs when people believe "thinking positive" is the solution to everything.
The problem with these well-intended replies, in response to opening up, isn't their validity, or lack thereof, it's that they shut down opportunities for vulnerable and authentic connection.
Positivity has become our generation's crash diet, our band-aid fix, our prescription for everything. It's like everyone's holding onto a prescription pad ready to write anyone with an issue a prescription for "positivity" but can't seem to swallow the pill themselves.
The intention behind the positivity movement is good, the intention comes from ground-breaking research on the plasticity of our brains, but it ultimately comes across as dismissive.
Honesty about symptoms isn't negativity and positivity won't cure them.
I think we become so uncomfortable with our helplessness when we can't find a quick fix to a problem our loved one is facing that we try to make one. We brush it off, we change the topic, we do anything and everything to avoid vulnerable conversations.
In Dr. Brene Brown’s book "The Gifts of Imperfections" (which I highly recommend), the author explains how only authentic and vulnerable relationships protect ourselves against shame. In other words, the lack of willingness to be vulnerable with those we love about our chronic illness can be extremely detrimental to our physical and mental health, even more than previously recognized. Dr. Brene Brown termed the phrase "wholehearted living" to refer to a life of authenticity, vulnerability, and feelings of belongingness (not to be confused with feelings of fitting in).
Humans crave this, humans need this, but it seems like the less relatable our issues are, the less open people are to talking about them. If we were like other 20- 30- 40...something-year-olds that had issues at work, we'd be able to talk about it openly with their other friends who'd also know what it's like having problems at work.
So those who suffer with a chronic illness become trapped: either we swallow how we're feeling in the presence of our healthy friends, or we risk becoming less and less relatable to our healthy friends. It's not just that our healthy social circle pressures us to constantly be positive, it's that we have this guilt stemming from internalized ableism that discourages us from being authentic about our issues.
We become stuck in this positivity trap that others have cornered us into but it's our own internalized guilt has keeps us there. This positivity trap is the idea that you need to be "positive" 24/7, which is not only unrealistic but unhealthy.
I mean, come on, whoever said "the only disability in life is a bad attitude" must not have had a disability.
Now I'm not trying to say that you shouldn't be positive, definitely not! This article is coming from someone who is the owner of what seems like a small library of self-help books, I pray and meditate daily, I keep a gratitude journal, I have inspirational quotes all over my house, and I see a counselor in order to unlearn destructive ways of thinking..
but I also cry, break down, feel guilty, and refuse to suppress vulnerability in order to be seen as "positive."
I think there's this inner temptation, and outer pressure, to be seen as the sick girl who's always strong, always conquering, always overcoming, and if she's not doing those things then at least she has a really positive attitude in the midst of every single struggle. Pictures flood social media of someone in a wheelchair doing something with the caption saying "what's your excuse?". Inspiration porn.
If your definition of inclusivity only includes people with disabilities when they're inspirational, then you're not really inclusive.
So what are we to do? As Dr. Brene Brown explains, we shouldn't share the every detail of our stories with every person we encounter, as not every person is a "safe person". However, she explains that we ALL need at least ONE person with whom we can be our authentic selves.
I'm blessed enough to have quite a few. Truly. I do not experience outside pressure from friends or family to remain positive. All the pressure comes from myself.
Internalized oppression (ableism, sexism, racism, etc.) refers to when the individual in the minority group develops ways of thinking and acting that are in line with those that oppress them. How can this be? Well healthy people and sick people are socialized in the same environment, with the same standards of beauty, with the same financial definitions of success, and with the same ideas of what it is to "make it" in life.
The quickest result that comes to mind for me is this video I watched in one of my lower-division psychology classes years ago when young black girls were recorded individually asking to choose a Barbie. Every single black girl in this specific video (I'm not sure how long ago it was recorded) chose the white Barbie over the black one. When asked why, the black girl would say "because she (the white Barbie) is beautiful." Heartbreaking? Devastatingly so.
When we hold ourselves to the standards society places on a healthy person, we set ourselves up for a lifetime of feeling inadequate and shameful about our existence.
I still struggle with internalized ableism. I have the most loving support system in the world yet I feel pressure to constantly be positive. I post things on my health Instagram and then delete them because I think they sound too negative. In fact, I see this in the chronic illness community quite a bit. I'll watch an Instagram video about someone with a chronic illness who just went through a surgery and is explaining how they feel. Then in the next video, through tears and unbearable pain, they apologize to anyone who's watching for being so negative.
But they weren't complaining, they weren't dwelling on the negative things in life, they were just stating them.
"Courage originally meant 'to speak one's mind by telling all one's heart" (Dr. Brene Brown).
There's a difference between experiencing a negative life circumstance and choosing to stay there. Sometimes we don't have a choice to get up from it and adapt a different mindset, but quite often we do, and we naturally get there in our own timing. But we're too quick to apologize for any sign of authenticity that breaks free from the positivity trap.
Saying "I'm currently in a flare and life's honestly pretty hard at the moment" is an example of honesty, vulnerability, and authenticity.
Saying "Don't even get me started about the drive up to the appointment, my mom wouldn't let me change the radio station, we got cut off 5x... (and trailing off for 20 minutes" is understandably going to be seen as negative and complaining if you're using whoever you're talking to as an emotional punching bag and draining them every time you speak. We can't expect to throw all of our emotions on top of our social circle and expect them to just deal with them or fix them, that's not fair either.
So for the sake of our health let's give ourselves and others grace, encourage authenticity, risk being vulnerable, and embrace the journey of finding joy in the midst of suffering.
To me, joy is a deep sense of peace that's unwavering in storms. One can be both sad and joyful, ironically. I've experienced depressive episodes and have still felt joyful. Joy isn't happiness, joy isn't a feeling but a way of being.
Joy anchors me to the firm foundation of Christ in the midst of a storm. Joy tells me that I may be scared, sad, or worried, but that I can trust in the One who moves mountains and speaks to the waves. While joy acknowledges the size of the waves, it focuses on the One who controls them. Positivity tells me the waves aren't that big to begin with. In a sense, abnormally high levels of positivitiy in abnormally low circumstances can be a sense of denial.
Positivity tells me I'll be fine because this storm will end,
Joy tells me I'll be fine if it doesn't.