BELIEVE US: Invisible Illness Awareness Week

BELIEVE US: Invisible Disabilities Awareness Week - Carrie Kellenberger

It’s Invisible Illness Awareness Week!

Invisible Disabilities Awareness Week is held in October every year. It’s hosted by the Invisible Illnesses Association. 

Invisible Disabilities WeekThis is a time of year when disabled patient leaders around the world work together to raise awareness for people living with Invisible Disabilities. You can learn more about this initiative via their Facebook Group at Invisible Disabilities

Invisible illness advocates from around the world and in our communities are working to create awareness about what life is like with invisible illness and invisible disabilities.

I’ve participated in this event since 2015 because, as many of you know, I have several invisible illnesses and I don’t look disabled. I was diagnosed with Ankylosing Spondylitis in early 2009.

I've participated in #InvisibleDisabilitiesWeek since 2015. As many of you know, I have several invisible illnesses. I don't look disabled. I have Ankylosing Spondylitis and fibro. Click To Tweet

By the end of 2014, my medical team had added Fibromyalgia and ME/CFS to my list of growing health issues.

Why It Matters: Invisible Illness Awareness Week

Today, I spend most of my time at home and very rarely leave my house for fear of making myself sicker.

My first post for this event was written in 2015 and it explained how pacing and management works for chronic illness.

Pacing is a technique I’ve employed for close to six years now. I use it to try and manage how much energy I’m expending each day and to try and prevent flare-ups of disease symptoms. 

Pacing is one way that I cope with chronic illness.

Pacing for pain management is crucial to my lifestyle, and without some sort of plan in place for each day, my life can quickly spiral out of control. Click To Tweet

Today’s post is going to be a hard one because I’m going to write about some of the ways I’ve been treated since becoming sick, so please stick with me.

READ:  Living with AS and Why We Need to Keep Moving

Most of the time, people see me and think nothing is wrong with me. Millions of us are in this situation, and this puts people with disabilities at a higher risk of abuse, neglect, and being victims of crime.

Current statistics show that disabled people are four to ten times more likely to be victims of crimes than people without disabilities are. (Source: https://www.disabilityrightsca.org) 

Invisible Disabilities Awareness

The best thing you can say to anyone with an invisible illness is:

‘I BELIEVE YOU’

You can read more about my invisible disabilities here and learn about what people like me go through in a world that is not built for us.

Please be aware of people with invisible illnesses and disabilities. Not all of us are visible.

I am an ambulatory wheelchair user, which means I use my wheelchair for long periods of time, but I try to walk and stand when I can to avoid getting stuck in a wheelchair forever.

My limit is 3,000 steps per day or 22-30 minutes on my feet per day. That is literally all I can do.

I need to be vocal about my disability because I don't look sick. You will never see me on days I do look sick because those are the days I don't leave bed. You can tell on those days. Click To Tweet
Disability - What Does It Look Like

When you have an invisible chronic physical condition such as ankylosing spondylitis, rheumatoid arthritis, any other type of arthritis, endometriosis, ME/CFS, fibromyalgia, Crohn’s, IBS/IBD, multiple sclerosis (MS), lupus, etc., it is very hard for me and for other people like me because we don’t get to ‘come out’ about our disabilities.

READ:  What Is A Flare?

This means most people don’t recognize we are sick and disabled, which is why it is so important to listen and hear when a person says they are disabled and can’t do something.What life is like in Taipei for people who are mobility compromised

No one sees how sick I am or how hard my life is. My life is affected every day because of this.

Invisible Illness Awareness Week

Not all invisible illnesses and disabilities are visible!

Here are some examples of how I have been treated in and out of my wheelchair.

During each example, I spoke up about being disabled:

  • Accused of abusing flight assistance because I ‘don’t look like I need it.’
  • I stopped taking public transportation because people yelled at me for using the priority seats because I don’t look sick.
  • I’ve had people sit on me in the hospital waiting room because I look young (I’m 45) and people thought I was being disrespectful by not giving up my seat.
  • I’ve had people move my wheelchair without my permission.
  • Transported by animal cargo in Manila because the airline was not prepared for disability services, even though I let them know in advance.
  • I had a Toronto Pearson airport porter yell at me for the 20 minutes it took to take my bags from terminal 1 to terminal 2. I paid him three times his normal fee. He abused me the entire time: called me a liar, said I was dumb not to give myself enough time between flight transfers, and said I would never make my flight. He took off with all my personal belongings and was 20 feet ahead of me while my assistant was running with me in the wheelchair to catch up. When I started crying, he got nervous, but never apologized for verbally abusing a woman in a wheelchair who had just spent 16 hours on an international flight.
  • I’ve had people threaten to move me physically because I was ‘in the way’.
  • I’ve had able bodied people ignore my requests and make decisions for me simply by judging me by my appearance.
  • I’ve had people get in front of me in front of disability elevators because they were in a rush and didn’t want to take the stairs. They did not believe I needed to use the disabled elevator.
  • Disabled parking spots in the US and Canada? Don’t get me started. Heaven forbid you don’t at least have a cane as proof.
READ:  Chronic Pain Quotes That Pain Patients Can Relate To

Please show kindness and compassion when someone says they are disabled or have an invisible illness

I’d also like to mention awareness for other large groups of people with hidden illnesses/disabilities that are often overlooked and are ALWAYS grateful for kindness and compassion:

  • the blind and hearing impaired
  • people living with HIV/AIDS
  • anyone who falls on the autism spectrum
  • cystic fibrosis
  • epilepsy
  • brain injury, and of course
  • any kind of psychiatric illness

There are so many, I can’t fit them all here, so again #AWARENESSMATTERS

We all try so hard every day to keep things normal and to fit in. It’s time to recognize the efforts we make to live in a world that is not made for us.

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for chronic illness by WEGO Health and Healthline. Twitter @globetrotteri Instagram at https://www.instagram.com/carriekellenberger/. I also have a dedicated page for My Several Worlds at https://www.instagram.com/myseveralworlds/. Each IG feed features different content.

7 thoughts on “BELIEVE US: Invisible Illness Awareness Week

    H

    (March 18, 2020 - 11:05 pm)

    Thanks for sharing your experiences in such an informative post. I’m sorry to hear about your bad experiences of being mistreated by people. We live in a world full of callousness and suspicion, which further fuels how some people treat you.

    Claire

    (October 21, 2020 - 11:00 pm)

    I found it really poignant that you couldn’t list all invisible disabilities because there are so many. It’s so true, and none of my conditions are ‘visible’ either. Yet people, even a couple of doctors, have made comments that I look well. Yet looking well isn’t the same as being well. It seems few people know that.

      Carrie Kellenberger

      (October 22, 2020 - 4:16 pm)

      I wish I could have done that. This post is a year old and I still feel bad that I can’t list them all. I tried to hit the main focus groups instead and just remember to tell people that it is what it is! We learn every year and I love this campaign because they do a great job of including all voices from every corner of the earth.

      I have a love/hate relationship with appearance comments, btw. I generally don’t like people commenting on my appearance unless they want to compliment my outfit or make-up specifically. This is because I’m never feeling well and it makes me feel like people don’t see that. But sometimes it’s nice to hear that my eyes are pretty. 🙂

      Last week my housekeeper told me I was fat. 🙁 I think she meant that my face had filled out after severe adrenal fatigue, but it’s those kind of comments that really irk me. (This is an Asian thing, btw. It’s rude in North American cultures, but it’s very common for people to literally say you’re fat in Asia.)

    Chronic Mom

    (October 22, 2020 - 1:49 am)

    Transported as animal cargo? Oh my goodness that is horrible. Thanks for talking about this subject, I don’t think people fully understand how hard it can be to have an invisible disability.

      Carrie Kellenberger

      (October 22, 2020 - 4:18 pm)

      If I showed you the photos, you would be horrified. You can see my tear-streaked face and the stupid bar where they chain things to keep them from rolling around. It was so hard. Easily one of the worst international trips I’ve made. It was 30 hours of hell from Taiwan to Canada.

    Sheryl Chan

    (October 22, 2020 - 6:18 pm)

    Such an important topic and post. Thanks for being such an ardent advocate. Society can be tough and more awareness is needed.

    Katie Clark

    (October 26, 2020 - 7:59 am)

    Just being believed without having to prove ourselves over and over and over. It gets so tiring. I can’t believe some of the situations you’ve experienced. Probably because you’re young and strong looking. Hard to believe you have to pull out your card to show why you’re in a wheelchair. The epitome of you having to prove yourself is to have to go off all your meds to show just how sick you are so that you can get coverage for the medicines that you so desperately need. I can’t even…#!#$!#$

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