Go Google It Yourself
“My family doesn’t care; they won’t even try to learn anything about the disease.”
“Friends read one article and think that they know everything. Then they tell ME how I should feel or what I should do to fix everything.”
“I’m all for educating and sharing information, but PLEASE make an effort and read about it yourself. I’m tired of repeating myself to people who don’t listen.”
Understanding that we don't understand
My heart is heavy with the conflict in our country. The situations are not new, but it has come to light that a lack of awareness, firsthand knowledge, and experience have kept many of us in the dark about the realities and issues important to significantly marginalized, abused, and misunderstood segments of our population.
Even if we thought we knew, how can we? It’s like living with a chronic disease— “You don’t get it until you get it.” People can try to understand, but without living it, you just can’t fully grasp the impact.
It's hard to know what to do when you're not impacted directly
From the outside, it’s hard to know what to do to be helpful if you are not a member of a misunderstood, under-appreciated, and marginalized population.
I have African American friends within the Black population of our country who are exhausted. Their emotions are spent. They are on edge and quick to anger, rightfully so. I can respect that. They have lived their reality for years and maybe close friends never really even noticed.
If we pause and think, how well are we able to notice what’s going on in the lives of those around us?
Good intentions aren't always enough
Some of my friends appreciate the conversations that have begun, but are also frustrated with well-intentioned acquaintances who say, “just tell me what I can do.” Sure that sounds helpful on the surface, but it may not be. In essence, such a request can be perceived as throwing personal responsibility back onto the disenfranchised individual who is struggling.
Doing our own research
That’s not something I had considered until I heard a friend talk about how this was happening to him over and over and over again. He was just so tired and wanted to say, “Oh, no you don’t. It’s not up to me to tell you what to do. Go read about it. Do some research. Hey, you know how to use Google. Go Google it!!”
Sometimes you have to take the initiative to educate yourself. Do a little research, and I don’t just mean read an article or two, or worse yet just the headlines. Dig a little deeper and examine how another person’s situation may differ from your own. Or find the areas where you have common ground.
But don't try to center yourself in the discussion
However, this is not the time to say, “Oh yah, that happens to me too.” An insincere attempt at empathy is sometimes worse than saying nothing at all. Not all fatigue is the same, nor is all pain. Each person’s experience is somewhat unique.
“What can I do for you right now?” - “How are you, really?” - “I don’t know what it’s like for you, but I’m here for you.” Thinking of the chronic illness community, isn’t this what we want our friends to ask? Sometimes yes, sometimes no.
People with chronic illness often feel misunderstood
Within our communities, I’ve read so many members express frustration that friends or family don’t want to learn more about rheumatoid arthritis or multiple sclerosis. They are appalled that people won’t take the time to “google it” and read up on the disease. But why would they if they don’t live it?
Lessons we are taught as children
We are taught as children not to stare at the person in the wheelchair. Definitely don’t bother them with questions. We are taught to turn away if we see conflict between others. We are taught to mind our own business. We are taught to ignore what happens to others in an attempt to protect ourselves. Definitely don’t make yourself emotionally or physically vulnerable; that opens up a whole lot of potential dangers. Our senses of curiosity, interest, empathy, and concern are taught right out of us.
What do we want from others?
So, as a member of the chronic illness community, what do we really want from those around us? Of course, what you might want and what I want will likely differ greatly. The same is true for members of any type of community, no matter what characteristic binds them together.
But no matter how exhausting it is, we must be ready to respond to the questions. Be ready with ideas and suggestions. Be ready to tell your story. Be ready to say, “Hey, you’ve got it wrong, but here’s where you can learn more.”
Also know that it is okay to be brave enough to say, “not today; let’s talk tomorrow.”
What should we expect from others?
Maybe we should stop expecting friends and family to “google” our disease. There are doctors who don’t even want patients to “google” their disease. If you don’t know exactly what you are searching for, you run the risk of finding a lot of inaccurate, misleading, and uninformative information.
But no matter the situation, conflict, symptom, disability, or otherwise other-ness, one thing we can always do for ourselves is to be kind. Be kind and patient with yourself. Be kind and patient with others. Be self-compassionate.
Once you have fed your own soul and nurtured yourself, you will be better equipped to teach those around you how to be kind as well.
Kindness and compassion
Kindness leads to compassion. Compassion leads to curiosity and openness. Curiosity leads to knowledge. Knowledge leads to action. Action leads to strength. And strength is deeply rooted in kindness and understanding.
So please be kind to yourself. Be kind to those who do not understand your situation and do not know how to learn more about it. Be patient with those who want to learn but who are looking in the wrong places.
And, ironically, if you want to learn different ways to be kind to yourself, google it. Since you know the type of information you are looking for, you will be more likely to find some great stuff.
Be well, my friends. Please take care.
How many specialists did you see before finding "The One"?