I know many of you suffer silently with your invisible illness… you work hard to feel good… to get through EVERY. SINGLE. DAY… you do it many days without complaining and without showing your pain… and then someone just tramples on that hard work and makes you realize just how invisible your illness really is.
That is exactly what happened to me today.
I have been working very hard to lose weight, mostly because I want to feel better, and it doesn’t hurt that I feel good in my clothes. I haven’t really felt the benefits of physically feeling better (yet). I feel “lighter”. I am down 30 pounds from a year ago and it’s nice to feel the accomplishment of losing weight. BUT! Don’t get it twisted, I still feel like shit a lot of days and I still have to work hard to get through the days. The pain is still there. I still overdo it so I can enjoy life and I still suffer for overdoing it for many days after.
Today was a hard day for me. I wasn’t feeling good so I parked in a handicap space. Yes, I park in the handicap spaces when I’m not feeling good. I can tell you with all honesty that I’d rather not have a handicap placard if it means I don’t have Fibromyalgia. Anyway, as my husband and I are walking into the store this older couple drives up next to us and this is how the conversation went… and trust me when I tell you that this is the cliff notes version (for those of you that don’t remember cliff notes… this is the summary):
People, “Are you both handicapped?!?”
My husband, “My wife is.”
Old rude lady, “Well you don’t look like you are. I have to use a wheelchair and you seem to be walking fine!” … At this point I’m a bit confused and dazed by the way these people are talking to us.
My husband (very politely), “Why don’t you pull over and I will move my car so you can park there and I’ll just come pick up my wife when we are done.”
Old rude lady, “No, it’s okay”
My husband asked again if they wanted to park in our space and was very polite about it. Meanwhile these people were so mean and rude … and then they drove off talking about how they would park somewhere else and then the husband yells out the window, “You walk pretty goddamn good for someone who’s handicapped!“.
I can’t believe how perfect this image is for this post!!
Seriously? Yes, this is a true story. I was pretty stunned and embarrassed. I’m not sure why I was embarrassed… although if I’m honest with myself I know it’s because I look perfectly fine on the outside. I just walked in the grocery store… didn’t really shop and then we left. We were on the way to our niece’s birthday dinner and I was really trying not to let it get to me… but that was basically impossible… and of course a few minutes in the car and I’m in tears. Having an invisible illness forking sucks. I mean it big time forking sucks.
I already felt like absolute shit, but I’ve missed so many special occasions that I didn’t want to miss this one. I probably should have stayed home in the end… I had a hard time. The stress of what happened just made everything so much worse.
I’m glad I went, it’s nice to be around family. If I had come home I know it would have been so much worse for me. I would have started that damn spiral down, down, down. As I sit here at the end of the night, I don’t feel great, but I can tell you… I can’t be stopped.
I hope I never go back to the days when I was walking with a cane… when I was in a wheelchair… when I missed every special occasion that came around… when I would get halfway to the dinner table and be in so much pain, I would have to turn around and have my husband help me back to bed… when I literally stayed in bed for days and days… the days of being in tears… ALL. THE. TIME… fuck that. I’m not going back.
Those handicap placard police driving around in the parking lots, giving people like me shit when they don’t have a clue… well I wish them well and I hope that noone ever treats them the way they treated us tonight. I will say a prayer for them and move on.
People like that… they can’t bring me down. Yes, admittedly, I had a moment… well a pretty long moment that lasted for hours, but I’m over it now.
It’s not easy to share this kind of stuff, but I know that there are people out there who have had the same experience. Once again, unfortunately, you are not alone. I’m with you. Don’t hold on to it, don’t get angry, don’t feel sorry for yourself. Say a prayer for whoever disrespected you and move on. Let them be miserable. You continue on and find your better self.
And now? It’s time for bed. :)
Thank you for hanging out with me and I wish you all the best pain free days ever!
Stay cool.
Tamiko
my foggy brain 
I know I’m chiming in late (just discovered your blog), but I’m sorry this happened to you. I hope it doesn’t happen again, but people are crazy. They think they know more than your doctor who certified you handicapped, apparently.
I knew someone who had peripheral neuropathy from chemo during breast cancer. She got yelled at just the same way you did, and whipped off her wig and screamed at them that she had cancer. They just yelled back at her something to the effect of she sure looked like she was able to walk.
Some people are just mean and ugly individuals. I think it boils down to unhappiness. They’re unhappy, and they see everything through that lens. They are their own punishment.
Well from the point of view of the law you couldn’t park there unless you had a card, however I know exactly how you fell as a Fibromyalgia sufferer as well and other health problems; I am sick tired of people telling me how fine I look, that I don’t look ill, that I can walk.. well we may don’t look ill but we are in deep pain, if I walk it’s because I have to so that my muscles won’t stop working, and after a walk I can barely feel my legs and I have a severe spine problem yet I try to walk whenever I can even with all the pains… it’s indeed awful how people tend to judge us and like you said and well not every disability is visible!
I feel like a lot of the “disability police” don’t have their hearts in the right place at all, they just feel jealous when they can’t use the “special space” and have that convenience. I get dirty looks every time I have to use a disabled seat on the metro- I don’t have to use it every day, but when I do I REALLY DO, and the idea that someone in their twenties could possibly be disabled just doesn’t even occur to most. Sometimes I even have to use my cane, and I still get nasty remarks because “I’m too young to be sick, I’m probably just faking it.” I don’t care about nasty comments from other people anymore- to make sure I don’t let myself feel emotionally victimized by such encounters I just give a biting reply where I tell them straight out I wish I didn’t have to do these things but sometimes my POTs gets so bad I will get a heart attack if I stand for just a minute longer and I’m not willing to go into the hospital because they are a judgemental jerk, and saying that usually gets them to reflect on themselves and stop annoying me and I’m happy to say it to jerks even though it’s a tiny exaggeration because it would feel like a heart attack but not actually be one- but for me it only gets really personal when a doctor who doesn’t specialize in my illness will see that I have it in my chart and then try to tell me I’m a liar and my own doctor is an idiot because the GP themself doesn’t believe a young person can have a chronic illness and mobility challenges.
I am so sorry this happened to you.
I had a similar experience recently. I have a placard but I don’t use a cane or a wheelchair. (have in the past, just not currently using them). I am youngish (41) and look healthy. An older woman yelled out of her car window talking about me not looking disabled and how there was another woman who was really disabled. I had just finished grocery shopping by myself and was exhausted, no energy to fight back. I just mouthed “I can hear you” and got into my car. I had to rest so I could make the trip home. I was literally in the car with my limbs shaking and a racing heart rate. And I had to laugh at the absurdness of the situation. I like your response of praying for them and moving on, they are truly misguided individuals.
I have a theory that many of these “well meaning placard police” are people who were denied a placard by their doctor and now they think noone else deserves it either. I don’t know but like you I try not to let them get me down. I would love to be well enough and not need the placard but it’s necessary as deemed by my doctor. (I have fibro and M.E.).
people may have their hearts in the right place when they feel like they are defending the less abled people in the world… they just don’t realize that we come in different images of what that looks like. i hope they never have family, friends or themselves diagnosed with an invisible disease… but maybe they can educate themselves and possibly THINK before they decide to yell out their car windows. maybe if they are so passionate about policing these handicapped spaces, they can get out of their car and approach me in a respectful way and with an open mind, learn.
i am sorry you also had the same experience, but i believe we are stronger together in our fight to live better lives. let’s hope we don’t have this type of encounter again! it truly is exhausting.
thank you so much for stopping by and taking the time to share with me. it means a lot to know people really get the challenges we face everyday.
have a blessed day!
I am so sorry this happened to you. I was diagnosed with Fibromyalgia and can relate.
This pisses me off and they ought to be ashamed. What if someone had asked them is that your wheelchair or does it belong to someone else.
i agree, it’s not always easy, but i generally find if i were to act the same way in return i probably would have made myself so sick. we have our good days and bad days… i just chalked this moment up to very bad…. but the day overall was still pretty good. 😊
thank you for your comments, it’s so nice of you to take a moment to stop and share. have a blessed day!