It Is What It Is – Invisible

“Appreciate what people do well, and celebrate who they are, assuming that they do what they do well. After all, it is what it is.” –  Christopher Peterson


We seem to have no problem accepting and appreciating on faith most of what people tell us about themselves to be true but when it comes to living with an invisible illness the doubters come out of the woodwork. Can we really blame them? Hang on before you get upset with me, please read on a bit.

 

“There is nothing more dreadful than the habit of doubt. Doubt separates people. It is a poison that disintegrates friendships and breaks up pleasant relations. It is a thorn that irritates and hurts; it is a sword that kills.” – Buddha


I started thinking of this concept of discussing our health struggles in terms of them being invisible and why it is so upsetting to us that people don’t immediately take our word for what we are telling them regarding our health or need for accommodation but also that we get so upset with strangers when they choose to doubt us. I will work to tell the world about this disease but I won’t hold it against people who don’t have the understanding… yet.

In the mean time I will accept where I can and enlighten when I can because -

 

It Is What It Is. By it’s nature – invisible.

 

There is a beautiful image above if you could just believe me and take my word for it. It is invisible – do you believe me?

I have some difficulty with the concept of insisting others understand what my life and what my difficulties are about. I insist that doctors believe me. I insist my friends and family believe me and I want a level of empathy for my struggles from them, the people who matter. I want us to have empathy for all people and all struggles but I also really want to live my life in the flow of society as best I can. Is that so wrong? I am going to find a blessing in AS being invisible while it is because one day it might not be. I will walk through my life as me first, disease as distant from who I am as possible. I will take the good that comes from it and continue to push back at the bad. Lesson the anger in every breath. Stop fighting and wasting energy on what I cannot change.

We talk about our invisible illness and how we expect people to understand that we are struggling even if they think we look fine. I think we are asking too much of strangers. I honestly don’t give a darn if a stranger doesn’t believe me when I say I need a wheelchair for the airport or help to get my groceries into the car. I will state in clear terms that I need an accommodation and I will not hold their ignorance or skepticism against them. They are a fleeting encounter and I will not let them bother me or cause me inner turmoil. And if a person wants to share their advice for how I can be cured or healed. I will listen and not take it as a personal attack. It is what it is.

It has taken time but I no longer allow others to doubt me. I have a disease you cannot see from the outside. No amount of energy I spend trying to convince a doubter or skeptic will add to energy I have for ME to live my best life possible. I covet energy. I could expend it on convincing people who won’t change their mind until it happens to them or I can use that energy for things others take for granted. I will NO LONGER use up a spoon trying to persuade another about what a life with an invisible disease is like. It is what it is.

I understand the need to do this for a bit while you yourself grasp how your life has changed but I urge you to move on from that point and focus your time, your beauty, and your life on all of the good things.

I don’t discuss this to upset anyone or tell anyone my way is better than their way. We all do what works for us and do the best we can. I discuss this so that we might take a moment to stop and think about what we are asking of strangers. They cannot see the pain we deal with. When we are upbeat and positive we are still keeping our struggle inside. We don’t want to continually share it with friends and family. We hold our pain and struggle just as people with emotional or an abusive pasts hold theirs. We hold it inside to not only protect ourselves from people who won’t take the time to understand us but we hold it inside when it is convenient for us too – like speaking with a stranger at an art opening or meeting a new neighbor.

We CAN have it both ways.

I am happy to not have my disease or disability the first thing someone notices about me – I am fortunate it is invisible because that means when others  first encounter me they do so without a preconceived notion.. For those where it is visible I commend them – their struggle will always be bigger – they don’t have the luxury of the choice of when to hide it. I am lucky enough to meet the world this way and if it means I have to explain myself in a situation where I need a little help and it is met with skepticism then that is a small price I will pay.

I don’t want to be upset at people because they can’t see what is happening inside my body with my immune system. I want to be glad that I have the choice to disclose when I want, how I want, and if I want. If my disability were visable I wouldn’t have that choice. I’d like you to join me in celebrating our invisible illness!

It is what it is and I’m ok with that.

JennaSigSm

 

 

 

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Comments 3

  1. Michelle wrote:

    “No amount of energy I spend trying to convince a doubter or skeptic will add to energy I have for ME to live my best life possible. I covet energy.” I think I needed to read this today :) Great article. xoxo

    Posted 19 Mar 2013 at 2:25 pm
  2. Doug Visscher wrote:

    What I find ironic/interesting/frustrating is that if someone says “I’m diabetic” or “I have a peanut allergy” then people automatically accept that, but they don’t accept when you tell them “I have AS” or RA or some other autoimmune arthritis. Shoot, even when someone says “I have such-and-such cancer” others automatically treat them as heroes and survivors (and no, I’m not bad mouthing cancer patients.) The thing is, you can survive cancer – many or most cancers are curable. Technically, you can’t be a “survivor” of AS. AS sufferers will always have it, until that happy day when a cure is found. I applaud all of the Walk Your AS Off folks (and especially the author of this post, whoever the heck she is) for trying to raise awareness, so that someday when you say “I can’t, I have AS” people will nod and understand, just like when someone says “I can’t, I’m diabetic.”

    Posted 19 Mar 2013 at 4:04 pm
  3. Vic Parnell wrote:

    I truly love this article Jenna. I also love Doug’s comment. Well stated the both of you.

    Posted 24 Apr 2013 at 4:09 am

Trackbacks & Pingbacks 1

  1. From Tiara’s Tuesday Talk – Tell Everyone! | Walk Your A.S. Off on 23 Apr 2013 at 3:45 pm

    [...] some apples from Jenna http://thefeedingedge.com/2013/03/it-is-what-it-is-invisible/ - by the way, that’s a picture of Jenna being invisible there too along with her inspiring and [...]

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