Disclaimer : No one is ever required to tell you why or how they’re disabled. I choose to share my diagnosis with you. It’s not your business or your place to question why someone who looks ‘able bodied’ is parking in a handicap space etc.
Now that I’ve said this here we go.
If you’ve been reading the blog or been following me for awhile you know that I am disabled and live with invisible illness.
I have chronic pain from getting in a car wreck in my teenage years that caused two discs to herniate and me to end up getting back surgery at twenty. I’ve had more damage caused to my back since then and work with a pain management doctor to handle it. I get epidurals four times a year, as well as taking medication to manage the pain. Without these things I can’t move. The pain is intense and unbearable. My body locks up.
On top of that I have Generalized Anxiety Disorder(along with PTSD and rapid cycling bipolar disorder with a co-morbidity of major depression), which I manage with therapy and medication. While I do have specific triggers, my anxiety can be pretty unpredictable outside of those triggers and my PTSD adds an extra layer of complexity to the situation. They aren’t things I can control.
Recently I was diagnosed with Acute IBS, which my anxiety plays into. I am also overweight. I’m working on it and have been for several years, but because of that and because people cannot see the scars from my back surgery…well things are assumed.
If I have to take a plane when I travel, I have to be taken around the airport via wheelchair. It’s uncomfortable because a lot of people assume I’m being lazy and taking the resource from someone who really needs it (and yes I have been told this in various ways and languages among other things). I often end up explaining my situation to avoid the discrimination and, well, once I have to do the full body scan because I have metal in my back, people realize I’m not lying.
And, yes, you can say that I could just power through the pain and not get the help.
But you’re wrong.
First off, due to my anxiety I’m already a mess, no matter how calm I seem. I’m scared and shaking. I don’t like to take my meds, for anxiety and/or pain, until I can do so privately on the plane because I do take medications that people abuse and steal. On top of that, if I don’t use those services, I’m not going to be able to move for the rest of my trip. My back will lock up, my muscles will spasm, etc.
So the first thing I do when I get in is check in at disability services and make sure my plane tickets say I’ll need assistance.
This requires patience because usually there’s a list and they take you to your plane based on departure time. Sometimes this really sucks because people like to think that they can talk crap about you where you can actually hear them and that this is okay. I’d be a very rich woman if I got a dollar for every time someone made a comment about me using wheelchair services because I was just lazy or taking advantage of something or other.
And, as you can imagine, that sends my anxiety into overdrive.
But I can’t freak out or they won’t let me on the plane. I also have to make sure there will be someone to help me when I arrive at my destination. Whoever picks me up is going to have to carry the lion’s share of my luggage. Luckily my friends and family have been great about this.
In October of 2015 I flew to New York to sing at my cousin’s wedding. We had no issue with handicap services going there and had no issue with handicap services at the New York airport. But when we got back to Atlanta? There wasn’t a wheelchair waiting for me. When I spoke to the employee at the desk after struggling to get off the plane, she looked me up and down and told me I didn’t look disabled.
I blinked in disbelief. She sighed loudly and said she’d phone for disability services to help me get to my car. When my dad got off the plane he saw me sitting in the seats by the counter nearly in tears. After I told him what happened he went to the counter and tried to politely explain that I should have had a wheelchair and that we had been informed prior to our departure in New York that there would be a wheelchair in Atlanta. She told him that she’d phoned disability services.
Two hours passed. No one came. My dad had gone up three more times to see what the holdup was, but the person at the desk wasn’t very forthcoming with information. At this point I was in tears I couldn’t hold back from the embarrassment the lady had put me through as well as my back was spasming. I needed my meds and I couldn’t take them until we got to the car. Some things happened and it turned out she never called disability services. So finally my dad commandeered a wheelchair and very angrily got me to the car.
Delta found out about my plight and apologized, as did the airport. However that experience left a mark on me.
I’ve been on two more plane trips since, as well as going on one this December, and I’ve always been extra careful to make sure they knew I’d need assistance and that my tickets had notes to back that up. I also double check at check in desks. I’ve left nothing to chance since then.
I do a lot better on road trips for a few reasons. One, I’m sitting up front (I get carsick) or driving (if it’s night because I’m a good night driver). Two, it’s a lot less hard on my body because, again I’m sitting in a car until we get to our destination. Three, if I’m in a car I’m usually in a car with people I know so I don’t have to worry about judgement or other people being jerks.
However, with my back and invisible illnesses, due to the fact that my health can change at any given moment, with or without provocation, it’s hard to make and keep plans on trips as well as being physical on them.
Maybe I’ve planned to go to an amusement park, museum, concert, or something that requires physical activity. I want to do these things, but I may wake up and not be able to go because my back isn’t having it. I may have to stay inside because my anxiety makes it hard to be around people. My IBS could be acting up and I cant keep anything down or eat. There are also times when my IBS and anxiety team up and I get violently ill and my stomach feels like it’s being stabbed. Some of these things immoblize me.
Sometime these unpredictable, unexpected flare ups means cancelling things or having to take measures that make me feel like a burden.
If I make it to the activities I may need a lot of breaks. Case and point: DragonCon 2016. I went last year with my friend Sam. There was A LOT of walking. I had moments where I very much needed to sit down or was very overwhelmed and needed a quiet moment. However, I have a habit of not asking for these things. I tend to try to power through it because I’m so scared, due to situations in the past and my own insecurities, that if I ask for what I need people won’t want to go with me again or get mad at me or tell me that I’m overreacting. Or, even worse, I’ll ruin their time.
Sam would purposely ask if I needed to sit or just decide to sit herself so that I had to. We had a magnificent time.
I hate ruining someone’s enjoyment. And I hate conflict. I abhor it it on all levels and will go out of my way to avoid this.
I went to DragonCon again this year, again with people who support me. I wasn’t allowed to go for the two days I had planned and, due to medical reasons, was told I could only do one day. As much as my friends supported me, I had a lot of trouble telling them I was tired or that I needed a hour to sit down.
While me ‘disappearing aka going to sit’ frustrated them? We had an amazing time. Only we walked over 12 miles that day going hotel to hotel for panels and photo ops in humid Atlanta heat and traffic.
However I knew that just like I know every time, I was going to pay for it.
I spent the next seven days recovering from this one day of activity. Granted, we walked 12 miles that day which is the average for DragonCon (DragonCon ’17 is my third Con. Next year will be my fourth). Thank goodness for their disability services. Once you have that sticker on your badge NO ONE asks questions.
Another example: Recently I went to a concert with friends. They got to stand and dance for the whole concert. They had a great time and I’m very glad they did. But, as much as I loved the concert, I didn’t have the best time. Due to anxiety, I was kind of a shaking mess. And I spent the second half of the artist’s set sitting against a wall because my back wasn’t having any of it. But Betty Who killed it AS ALWAYS.
People checked on me a lot and all I could think of was that I probably ruined everyone’s time. My friends wanted to stay and talk to the opening band, The Geographers, but my pain forced us to rush home. I hated myself for this.
This is common. I often feel like this when I go with groups. I mean sometimes I do feel this way with a single person, especially if it’s the first time we’ve done something together. Often when I’m with a group it’s worse. My anxiety is in overdrive. Always. I don’t trust easy and I don’t trust many people, especially not when it comes to having my best interest at heart or not purposely making me feel like shit for asking for what I need.
However, when I communicate that I need time…I often, due to past circumstances, don’t trust that I will be given the time I need or the compassion, especially when I’m with big groups with people I don’t know. It’s triggery and, often, easier to just put myself in a bad headspace or deal with immense pain without telling anyone than bothering the group and hearing whispers or getting paranoid about the whispers or telling someone I need something and then being berated for asking for it in the first place or being ignored.
The problem with this, the pushing through, is that eventually that anxiety or pain is going to catch up with me. It doesn’t disappear or go away. It’s like putting it in a pressure cooker. Eventually it’ll be too much and the eventual blowout will be far far far worse than what it would have been if I’d gotten help or done what I needed to when it first started.
For example, if I knew I was on the verge of an anxiety attack? If I’d told someone when I realized and asked for a minute? I could have taken my meds and everything would probably be fine. However if I didn’t and pushed through because I didn’t want to be an inconvenience? I could end up in a hospital because I had an anxiety attack and lost consciousness..and that’s just the tip of the iceberg.
I’m often asked if I can keep up when I ask to go with people to an event or am invited.
The truth is. I don’t know. There are a few preventative measures I can take to attempt to prevent my issues from interfering with plans like taking meds, making sure there are people I’ll feel safe with and trust, not doing certain things, but that doesn’t mean an episode isn’t going to happen. I don’t have any real control over it.*
On trips with my friends I can’t help but think about how much fun they’d have with able bodied people that didn’t have to stop to sit for awhile or that didn’t have to take breaks. I know that there have been times I have been indirectly encouraged to not come to group activities.
It can be very difficult to travel or go to events with people with invisible illnesses, or illness in general. It takes a lot of trust, awareness, and patience. Some people just handle it better than others. Some people are just assholes.
Some people show great compassion and empathy. Some people are selfish and only think of their fun. A part of me gets that. When you’re paying for an experience, you want to experience it to the fullest. So when I’m not invited or discouraged from coming I get it.
It doesn’t make it hurt any less.
Travel and events have been and always will be a struggle for me. Maybe one day I won’t spend days and weeks recuperating from the amount of energy I expend, maybe this will always be my lot in life.
The point of this was to say, what you see isn’t the story. Don’t assume things about people you just met. That large lady parking in the handicap spot? She might be me. And, some days I just can’t do it all. So show some compassion. If that is somehow impossible? Shut your mouth and mind your own business.
❤ Later Lovelies
The Lady Lynx
*Which with my EPIC control issues…well you can probably imagine how badly I handle THAT.