I Don't Look Sick

This is such a great explanation of life with Ankylosing Spondylitis, written by a super advocate for As Awareness and wonderful friend, Cookie-Cheryl Hopper.  Thank you, Cookie for this and all that you do for our community! Shared by Amber.

 

Spondylitis is not always visible.... A throwback to April to revisit these extraordinary posts from two extraordinary women: Video by Chanel White and copy below by Cookie Hopper.

#invisibleOrhidden #TBT

“YOU DON’T LOOK SICK” …

~Cookie Hopper’s AS awareness post, as part of her 30-Day Challenge in honor of Spondylitis Awareness Month.  Shared with permission.

“I always wonder, exactly what are you saying, when you say that to me. Are you saying WOW you look amazing; I would never have thought you had Ankylosing Spondylitis? Or are you saying that I must be faking or lying because I look too good to have Ankylosing Spondylitis?

I never know how to feel when someone offhandedly makes that remark to me. Am I supposed to give you a hug because you complimented me, or should I slap you because I feel offended? Would it make you feel better if I carried my medical reports with me so when I don’t look sick to you, you can see documented proof?

Should I ask the nurse not to remove the IV line from my body when I have my infusions, so you will feel better when I don’t look sick to you? Would it make you feel better if my clothes had holes in them so you could see the pain patches I wear when I don’t look sick to you? Maybe I should carry all my prescriptions bottles with me so you could see exactly how much medicine it takes not to look sick to you. Would it make you feel better if I used my cane or walker EVERY day so I WOULD look sick to you? Or would it take me being permanently in a wheelchair to do the trick?

What exactly would it take to make YOU feel more comfortable about me not looking sick?

You’d be amazed what people who are diagnosed with an “invisible disease” go through when dealing with society, the snide remarks under their breath, the rolling of their eyes, the look of disgust when you use the motor cart at the store or the look of judgment when you park in the handicap spot. Some people actually find the nerve to come up to you and demand to know what is wrong with you, to give you the ‘how dare you’ or ‘you should be ashamed of yourself’ speech, amazing.

But it’s not only strangers and society who judge us this way; it’s our own doctors, the medical field, coworkers, friends, and family. It’s the doctor who dismisses us when we finally get the courage to be truthful about how bad it sometimes gets even during the times, we don’t look sick.

It’s the doctor who sighs under his breath because they feel you’re overreacting, when you voice concerns about what may happen to you in everyday circumstances because of the medications you take. A lot of times their tone is patronizing - acting as if we’re being childish or paranoid about something so “normal”. It’s frustrating because we’re trying to live a life that is full of uncertainty and the one that should take us seriously doesn’t because we don’t look sick.

It’s the emergency room doctor who makes a snap judgment about you as a person who happens to have a disease, they probably know nothing or very little about. Who assumes you must be a drug seeker and treats you as such because what other possible reason could it be, after all you don’t look that sick.

It’s the coworker who gives you the cold shoulder when you return to work because you look just fine to them, so you must have used your illness as an excuse to lie in bed eating chocolate watching TV all day, while they’re hard at work.

It’s the friends who stop calling or including you anymore, because no one that doesn’t look sick should ever feel bad enough to bow out, especially on more than one occasion. It’s the family members who complain or questions you about not being “over” it already or well by now, because you don’t look “that” sick to them.

It’s the partners who use your illness as an excuse to justify themselves in their behavior or actions toward or against you, because you don’t look sick, so you must be faking. It’s everyone who asks you how you are feeling, and then remarks ‘Oh I know how you feel, yesterday picking up the laundry basket my back started aching, but I soaked in the tub and it’s fine now, maybe take an extra Advil, I mean how bad can it be, you don’t look sick to me.’

It’s every single person who has played a part in making you feel guilty for something you have no control over; you don’t look sick, so therefore you must want to live this way.

I’ll admit it gets to me sometimes, I know it shouldn’t, but it does. It’s hurtful, humiliating, degrading, and demeaning to me as a human being, no one should ever experience this, but we do. I know I have.

A lot of people, even those with Ankylosing Spondylitis will tell me, oh let it roll off your back; don’t let it bother you, suck it up buttercup…. For the most part I am able to let it go fairly quickly because I realize I am being judged by people who know absolutely NOTHING about me and for those who do, really don’t have a clue what it’s like to live my life as a person diagnosed with Ankylosing Spondylitis, so that makes it easier to move on and let it go. I mean how mad should we really get at someone who doesn’t “understand” nor has the first clue about what we deal with.

I guess for me personally I wish people wouldn’t be so quick to judge us, because you only get to “see” what we “choose” to show you. Most of you have no idea that it takes me about 15 minutes to be able to get out of bed. That sometimes I break down in tears after a 20-minute painful battle with my shoes and socks. Most people can’t begin to understand just how hard it is to constantly be at war with a body that is working against you.

Even our family members have no idea what it takes for us to keep up the charade of “YOU DON’T LOOK SICK” so that other people will feel more comfortable around us. You have no idea how exhausting it can be for some of us to keep up with normal day to day activities; I’m not talking about manual work or mowing the lawn. I am talking about taking showers, getting dressed, going to the restroom, reaching for something in the cabinet, hell even scratching my own back. You know just normal stuff.

You have no idea how physically draining it can be to keep up the “positive”, I can do this attitude every single second of the day, when all we need sometimes is for you to say and MEAN IT, that you can see why it could be so hard on us. Not that you KNOW how I feel, but that you can see why I would feel this way sometimes, it really is that simple, at least for me it is. That is all I want, no that is what I need.

Just because society has labeled Ankylosing Spondylitis as an Invisible disease doesn’t mean I should be made to feel or treated as such. No one should ever feel invisible in their own home or with loved ones. I just want people to treat me the way they would want to be treated if they were the one living with Ankylosing Spondylitis.

I hope after reading this the next time you see someone who doesn’t look sick to you, you will be a little kinder, after all what exactly does “sick” look like.

As the old saying goes, try walking a mile in my shoes.”

~Cookie Hopper

 

Today I am grateful that my words were worth sharing by others, together we will manage through this.