Chronic Life: Finally applying for an accommodation
April 16, 2018
I’m not a fan of people and one of the reasons is this: people can be remarkably ignorant, judgmental, and downright crappy. In general it doesn’t matter because I avoid them as much as I can, but in one aspect of my life, it can matter a great deal.
My illness, the incurable and constant pain and fatigue, has been bad for years. It’s debilitating. I find ways to work while fogged with fatigue and aching constantly because it’s important to earn while we can and we’re just not wealthy enough for me to rest on my laurels, but that the amount of energy eaten up by work is not going to my family and life and that sucks.
It also sucks that I’m doing as much as I reasonably can to live my life in a healthy way and what little improvement has resulted is incredibly incremental. That doesn’t do a heck of a lot for morale, I can tell you that much!
I’m very lucky not to struggle constantly with depression – that old specter has only haunted me a few times. I’m also very lucky not to be wheelchair-bound yet – that would pose a whole host of other accessibility problems that I’m not prepared to navigate. Another aspect to navigate is my health problems are invisible. In some ways, this is good. I’ve been able to opt out of the staring, the harassment, the myriad ways people can be rude when someone is different. I have only had to fight subtle (or blatant) racism and sexism in the workplace, not the prejudices against disability.
On the other hand, my stoicism and browner complexion means that “look fine” even when I’m on the verge of collapse, even good friends don’t know how bad it is or can’t tell when I’m pale with fatigue. It’s invisible, impossible to prove and I hate looking weak, so my default setting has been to pretend that I’m fine and present a strong front professionally and personally.
This led to a conversation with well-meaning but ill informed friends who don’t realize just how many of us do NOT look disabled, and still need accommodations like disability parking. That was the first time, about 9 weeks ago, that I admitted to them that I have ongoing health problems for which I probably should have the placard, but won’t apply for it because I also know that it’s regarded as an open invitation for harassment. They were appalled but also had no idea that attitudes like theirs are incredibly prevalent and worse people take it much further to harass the people they think “don’t look disabled.” It’s something I just don’t have the energy for.
One disastrous day, taking JB to the Cal Academy of Sciences, we had to park almost a full mile away from the entrance. By the time I got close, I sat gasping for breath just inside. An elephant, my old pal, was sitting on my chest again and I felt like a tank that’d been siphoned overnight. Drained empty of all life and energy. JB tried to understand why I couldn’t keep going, and tried to sit patiently with me while I rested, but it was so hard for zir to stay put. Which is understandable! What three year old is going to find it easy to just sit and wait when even I struggle to have that kind of patience?
It’s far from the first time that that’s happened. It was just my breaking point. Of course I didn’t want to feel this way but I can’t stop the disease. At the same time, I’ve been resisting applying for a disability placard because I didn’t want to have a sign that said I needed help. I didn’t want to deal with the harassment. I didn’t want to admit I’d crossed that particular threshold – though I had long ago.
And yet.
I have to preserve my extremely limited energy.
I’ve emailed my current doctors who have been treating me for nearly a decade and they have issued the medical portion of the paperwork. I’m completely unenthused but will tackle the DMV portion of it when the signed documentation gets to me.
No experience for myself, but I drove my mother sometimes back when she had handicapped plates. She looked–and was– pretty healthy at the time. She mainly had arthritis and didn’t want to walk any farther than she had to. Parking in a handicapped spot was no big deal.
As a person who doesn’t need one, I don’t generally think very much about handicapped parking spots– I don’t pay attention to those spaces because they’re not for me. I wouldn’t bother policing who parks in them, assuming that I even saw someone getting out of or into their car in one.
I would hope that the judgmental people are in the minority and that the incidents that happen are things that get talked about because they’re so rare. I personally think that if the person has handicapped plates/the placard, only a person who is a fool would think anything of them using a handicapped spot. And anyone who would go so far as to confront them is both a fool and a jerk. I hope that once you get the designation, that your experience is a lot more neutral than you’re fearing.
I appreciate your not being part of the self appointed policing unit – it’s always heartening to know good people are out there.
I haven’t had to do this, but recently I did “give in” and agree to meds for my anxiety. While some days were better than others and my guy and I could make it work through the bad ones, I decided that it wasn’t about me and my pride in my coping abilities or feeling like I was giving up, or him and his being frustrated he couldn’t fix it for me, but it was about the kids and them not seeing me fall apart or hate myself etc.
Similarly, this isn’t about you giving up, it’s about how it impacts JB.
You don’t need my “good job” but I’m thinking it for you. Asking for help is never giving up or in, it’s making it easier for you to be the best Momma you can.
That reframing does make it easier to accept, doesn’t it? I’m also working on being ok with getting help for myself simply because I need it to be a whole human and not just because someone else depends on me. That’s also a very valid reason.
Thanks!
We are considering getting one for Baguette–not because she has trouble covering the distance, but because her impulse control issues lead to safety concerns, particularly in large parking lots. It isn’t something we’d use at, say, the supermarket. But somewhere like the Long Beach Aquarium or the San Diego Zoo? Those lots can be very dangerous, particularly now that she’s bigger and stronger and harder for us to physically wrangle.
That makes so much sense. JB bolts too and it terrifies me that ze will get away from me at some critical point.
I’m proud of you for accepting accommodations that you deserve and are entitled too. Anyone policing use of these placards needs to mind their own business.
Thank you! It makes me sad to know people who have been harassed repeatedly over it, but I’m hoping it won’t be my experience.
I’m sorry that other people’s bad behaviours have made this a harder decision for you than it needed to be. I am guilty of silently judging people for using handicapped spots, but a long time ago before I realized that there are lots of people such as yourself whose disabilities aren’t visible. I now just mind my own business, and I hope the people around you will similarly mind their own business and not be asses to you.
Thank you – I understand that it’s easy for people to just superficially judge. But I especially appreciate those who take the time to learn.
Yes, I remember clearly years ago staring at a woman in a parking lot who got out of a vehicle and walked inside with no visible aids. I’ve since learned better. It’s easy for me to forget that attitude exists when I don’t hold it anymore, and humbling to remember that I once did. A good reminder that a great many things are none of my business.
Glad to hear you’re doing what you need to do Revanche! I’m sorry things are difficult and the rest of us sometimes make them harder than they have to be.
I don’t really mind the disability placard holders taking the front spots at parking lots, they have good reason to and have to accommodate them by walking less to a place like the mall or the market.
I’m really happy for you for accepting your right to receiving one and should make it easier for you. That Cal Academy story you described is a good enough reason you should get one. Your health cannot take all that walking.
Those people who are being too judgmental or ignorant should mind their own business and worry about their own situation!!
Thanks for the support – I wish I had all you lovely commenters along when people pull their judgy thing! 🙂
You should apply for a disability placard. You don’t have to use it all the time.
As for ignorant people, just ignore them. They’ll learn someday.
Take care of yourself and family first. Best wishes.
It’s true, I definitely don’t plan on using it when I don’t need it! But it will be so helpful on those really tough days.
People are idiots sometimes, you have to do you. I strongly recommend a placard. That’s what they’re there for, you struggle just as hard and there should be no hesitation.
My mom got a placard when she injured her leg and she said it was awesome to park! After her leg healed she kept holding onto the card for an extra 6 months. Eesh, I just remembered that. Not the proudest moment!
They sure can be! And thanks for the support. Ok I had to laugh a little at your recollection.
[Mod Note: Rude, ignorant, and mean-spirited comments have been replaced with glitter and unicorn farts.]
Really, Linda? Sooo, she should only take trips if another, non-disabled adult is with her to chauffeur her around? How would you feel about that?
And wtf, mental disability?! Revanche is incredibly intelligent, hilarious, and I’m proud that she is one of my closest friends. If you think she is too much of a downer or whatever, STOP READING. And for the love of all you think is holy, stop commenting. Do you realize the way you write and act on social media makes it obvious you are a total, judgmental ass? You don’t have to be here. You chose to be here, read this post, and leave a crappy comment. So you aren’t just judgmental, you are also hateful. Good luck with that in life.
She can’t “get well”, wouldn’t that be nice. But you can go suck an egg. Don’t lash out at others for being too stupid to just go read another site if you didn’t like the one you’re on. And be warned that if you come to mine, I will mark you as spam faster than you can spit out whatever drivel you want because I’m not as adult and accepting as Revanche. Your comments wouldn’t see the light of day anywhere I have power, you soul-crushing prick.
Linda, I cannot imagine what you believe you are adding to Revanche’s life by commenting in this way, so I have to assume that you know you are being myopic and cruel and you are getting something out of it. Please think this through. Revanche is a real, lovely, hard-working, intelligent, funny, and giving person. You are not making yourself look good in comparison, and you are actively making the world a less bright and good place. The world doesn’t need that kind of help, and you don’t need that kind of negativity in your own psyche–and Revanche and her readers definitely don’t need your opinion.
Life is tough for everyone. Don’t be an asshole by making it tougher for someone who is open enough to share her reality with grit, compassion, and humor.
I hope you are able to hear me and stop what you’re doing before you try to make yourself feel better again by putting someone else down.
What a shame, Linda, it appears you only know how to be hateful and/or ignorant. Absolutely no one here is interested in a judgmental and petty person trying to get attention or hurt others.
[Mod Note: Rude, ignorant, and mean-spirited comments have been replaced with glitter and unicorn farts.]
Nope, you’re just being ignorant and rude. And you know it, too, or you wouldn’t have used 3 fake email addresses: Linda52@gmail.com, Linda68@gmail.com, Linda23@yahoo.com
Ah, and that says it all. Linda is a troll. Revanche, take my advice with a grain of salt, but I’d just delete her BS from here on out.
I am so happy to see you talking about this. I know I’ve had a hard time opening up about any “invisible illness” I’ve dealt with because I’ve been worried about being labeled a faker/liar. But at some point your personal well being has to take priority, right?
Anyway, thank you so much for opening up about this subject.Reference