It’s Invisible Illness Awareness Week!
Invisible Disabilities Awareness Week is held in October every year. It’s hosted by the Invisible Illnesses Association.
This 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.
I'm never going to hit zero symptoms with #Fibromyalgia and #MECFS. I rarely leave my home because I don't want to push myself & make it worse. BUT, I can still do 1-2 hours outside my home. Sometimes the payback is worth an hour or two of normalcy.#NEISvoid #MEAwarenessHour pic.twitter.com/7qz7qwrbIy— Carrie Kellenberger – My Several Worlds (@globetrotteri) October 13, 2021
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.
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)
The best thing you can say to anyone with an invisible illness is:
‘I BELIEVE YOU’
You have no idea how three simple words can validate another person’s lived experiences while also demonstrating compassion and understanding. 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. Below, you’ll find some of the horror stories I’ve had to live with as a disabled person.
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
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.
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.
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.
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
- 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.