I have an invisible illness. That means that I, along with thousands of others, suffer in silence most of the time.
It means that able-bodied privilege is not only all around me but that I’m hyper aware of it as most of the world assumes I am just like them. I’ve learned to live with my invisible illness and work with it but recently I had an experience that was a slap in the face to myself and anyone who constantly hears ‘But you don’t look sick!’
I am a 3-time cancer survivor facing heart failure and implanted with a Left-Ventricular-Assist-Device or LVAD to help circulate my blood. An artificial heart to put it in simple terms. And I’m relatively young at 35. Piercings, pink hair, pink cheeks, and a pretty smile so I don’t expect people to automatically know how ill I am.
I make efforts to not look like I’m dying whenever possible but sometimes I do need help. Recently I flew for the first time since getting my LVAD placed. I was nervous but prepared ahead of time. I had spoken to my doctors about it, I had a letter from them for TSA to make security easier, I spoke to the airline (Air Canada) ahead of time to make sure they were aware of my needs, and I requested wheelchair service so I didn’t have to overexert myself walking across all the terminals. I thought it would be fine. It was a nightmare.
On my first flight I pre-boarded so I could get help with my bag.
It’s heavy and contains my medical equipment and must be with me at all times but since I am still healing from my open heart surgery I cannot lift it up into the overhead bins. Pre-boarding is supposed to allow you extra time and help. When I pre-boarded boarded there were no flight attendants to be found. I pressed the call button but within seconds the plane was filled with regular passengers. I waited until the aisles were clear and called for help again but by the time a flight attendant came all the overhead bins were full. I started to really worry about my medical equipment and even more so when he started to insist that my bag MUST be checked.
I complained that I had pre-boarded for the extra help and never got it and he just walked away saying ‘write a letter’. It was only when I insisted that this LIFE SAVING medical equipment cannot be separated from me and started to pull out the letter from my doctors that he agreed to hold it up front for me.
I had told the agent when I checked in that I would need wheelchair service when I was to meet my connecting flight at Vancouver . I am familiar with Vancouver Airport and how large it is and I only had a short time between flights. This was compounded when my first flight arrived late. I disembarked and saw a man standing at the top of the ramp next to some wheelchairs. Already huffing and puffing just from dragging my bag up the ramp I saw him and smiled and exclaimed ‘Oh are you for me? I requested a wheelchair!’ He gave me a once over and saw a young healthy looking mobile woman and said ‘No, I have a cart.’ I looked confused so he said ‘A golf cart. Here take the elevator,’ and he pushed the button for me and walked away.
Up top I saw his cart and some seats and figured a cart was even better than a wheelchair so I waited for him or whomever was supposed to help me as I requested.
I watched all my fellow passengers leave. I watched the flight attendants leave. I watched the pilots leave. No sign of that guy again and by this time I was in a severe time crunch to get to my next flight.
So I start walking, getting more and more tired. At the end of a hallway I meet a young airport employee who was in a wheelchair himself. I explain my situation to him and he guides me to customs where he tells an agent there that I need a cart. She attempts to raise the man who was supposed to meet me on the radio 3 times but he does not answer. I start getting nervous about making my connection so she calls for another cart, puts me in the speed line for customs, and says the cart should meet me on the other side.
I go through with no issues but there is no cart on the other side. All the employees I ask about it have no idea where I’m supposed to go. I wander the terminal getting more and more panicked until I spot an Air Canada counter. I am panting and coughing by this point and I stumble over and say ‘Please can you help me?’ No one moves.
I explain that I had requested a wheelchair and none ever came for me. They still don’t move but one man sleepily asks if I still need one. I’m almost in tears at this point just out of sheer frustration. The woman who had helped me on the other side of customs walked by at that point, she had her purse and jacket and was clearly off work for the day.
She saw how upset I was and said she’d take me herself.
She grabbed a wheelchair and whisked me off as I thanked her profusely and tried to calm my racing heart down. She was an angel, she pushed me across the international and the domestic terminals all on her own and there is no way on earth I could have walked that far myself even if I had all the time in the world.
She got me as far as the security check point and then I was on my own again. Having already done this before my first flight I was all ready with my passport, boarding pass, and letter explaining my LVAD and how I cannot go through metal detectors and need a pat-down. My LVAD is internal but the controller and batteries to power it are external and connected by a cord that comes out of my abdomen and hang at my side in a bag.
I explained this to them and how I cannot remove this bag but they can inspect it. Still I was barked at and yelled at with demands to place my bag on the conveyor belt by at least 4 employees. I finally got fed up and was forced to lift up my shirt to show them where the bag came out of my body! Then and only then did they let me go through, and they still tried to force me through the metal detectors.
When I repeated that I need a pat-down I asked them to please hurry as my flight was leaving in 10 minutes. It is my opinion that this annoyed them. The man who seemed to be in charge started moving very, very slowly. The female agent did my pat down reasonably fast but he took my paperwork and walked away slow and took an unreasonably long time getting it back to me. At this point I lost it and actually started to cry and he just looked me in the eye and sauntered away slowly without breaking eye contact leaving me no doubt that he was punishing me for being emotional.
I finally got my paperwork back and thank the heavens there was a cart at the end of the security check, and even though he wasn’t there for me when he saw my boarding pass and how the plane was due to leave at that very moment he took me instead. He warned me that we might not make it and I started to panic, my heart started racing, and my chest started to hurt. We pulled up to the gate and the doors were closed. I started to cry and begged the agent there to let me on, it wasn’t my fault, I didn’t get the help I needed.
She took pity and let me on and helped me with my bag herself.
I boarded with the entire plane staring at my tear streaked face as I coughed and struggled to catch my breath and clutched my chest and I couldn’t help but feel like I was being terribly overly dramatic. But in hindsight all that running and fear and adrenaline might have hurt my heart and I was in very real physical distress. I sat down in my seat and promptly fell asleep before we even took off.
My return flight went fairly smooth except for one moment that put it all in perspective. This time I reminded everyone at every step of the way that I needed a wheelchair or cart at Vancouver and this time there was one there to meet me. Security was much kinder and a United Airlines agent wheeled me right up to the gate and parked me by the desk along with 2 other more elderly passengers in wheelchairs where I waited with my bags on my lap.
They announced the pre-boarding and United Airlines flight attendants came and took the two passengers in wheelchairs on either side of me so I waited for one to come help me as well. Then they announced regular boarding. I was honestly flabbergasted. I moved my bags off my lap and stood up from my wheelchair and everyone in line stared at me.
I went up to the agent at the counter and told him I needed to pre-board. He looked at me and sighed and said well they already announced it and I had missed it. I told him quite curtly that I know they announced it I was sitting right next to him in a wheelchair and watched as the other two passengers in wheelchairs got help so I had assumed I was going to be helped as well.
He sighed again and said something along the lines of ‘Fine, you can board now then if you want.’
He clearly seemed to think I was making it up and was just trying to cut the line. When I said I would be needing help with my bags he actually rolled his eyes! He grabbed my bag without saying another word and took off speed-walking down the ramp.
I trailed after him trying to explain that I have a weak heart and my LVAD and recent surgery and I actually was apologizing for needing him to lift the bag since he was so obviously annoyed. He put my bag up and walked away without another word and I sat down and felt like the biggest jerk in the world.
It didn’t even occur to me until almost an hour later that HE was the jerk, that I shouldn’t be made to feel bad for needing help, and that he had judged me with one glance to be a liar and a troublemaker since my illness is invisible. So did the man at the top of the ramp with my first Vancouver connection. He took one look at me and decided that I couldn’t possibly be sick. I was lying, I was lazy, I was out of shape and didn’t want to walk, or I just wanted attention. I sat there and all my shame and guilt turned into anger and righteousness.
I am a very independent woman and I already find it hard to ask for help. Then when I do I get judged and shamed and flat-out ignored! People of all ages can get sick. Wearing makeup to hide the bags under your eyes and clothing that covers your surgical scars does not mean you do not need help. Smiling and being polite does not mean you are not in pain.
My illness is invisible and during those flights I felt invisible as well.
Dismissed and ignored. It made me terrified to ever fly again and let me explain what a loss that is to me. When you live with heart failure you have to live as if each day might be your last because it very well might be. So that bucket list of things to do, places to see, people to visit one last time while I still can… most of that just became impossible for me if I’m afraid to fly.
My whole life I’ve refused to let my health dictate who I am and what I can and cannot do, but I believe that race across the airport could have killed me. And I cannot take that risk. I can’t risk being ignored again, I can’t risk being made to feel invisible as I pant and cough and beg for help.
So that is why I’m writing this and making it public. So that all airlines can take notice, not just Air Canada and United, and hopefully they’ll make some changes in the way they treat the disabled. Perhaps to spread awareness of people with invisible illness so that when a child is going through chemo but hasn’t lost his hair yet, or a young mother with fibromyalgia, or a teenager with chronic pain, or anyone else who doesn’t fit the stereotype of a ‘sick person’ asks for help they are met with courtesy and respect not judgment and rolled eyes.
I have been flying alone since I was 7 years old without a lick of fear and I hate that this experience has made me afraid. I hate that others ignorance is crippling me more than my own illness. So I’m speaking up and I hope others will as well and that together we can make the world a more caring and comfortable place for all those with disabilities, hidden or otherwise.