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Having Fun While Sick
A PHriend shared this today and I wanted to share with y’all here in the forums. It’s a good read and I know I can relate . It was written a few years ago but I found that I could relate to it and y’all may have interest as well.
https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick
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23 Replies
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This is such an excellent article Jen and I bet it will get a lot of response! Who among us doesn’t have a story that relates to this topic? I thought of one immediately!
We had a handicap placard for our son when he had PH. If he went into a store with us it was because he was having a good day and wanted to do something “normal”. Walking in he would appear to be a healthy child, but often by the time we would head back to the car his PH would be taking it’s toll. He needed the handicap spot for his exhausting, slow walk back to the car after just a brief shopping trip. One time we were startled by a police officer who seemed to appear out of no where as we where getting out of our car. He sternly asked me who the handicap placard was for. I pointed to my son and I could see that he was skeptical. I had to turn my child around to show the officer the backpack holding my son’s Flolan pump with central line sticking out from it and running up to his chest. I actually wasn’t that upset that the officer was checking to make sure the parking space was being used properly, but his reaction after I proved our need bothered me. He simply said, “Oh” with a disappointed look on his face and he walked away. It made my son feel self-conscious and questioning whether he deserved to use his handicap placard. Sometimes skepticism came from people we least expected to react in such a way.
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Colleen,
I hate to admit that this happened to me too with an altercation with a police officer. I was fueming to say the least. I parked with my friends at a dunkin donuts and one of my friends went in to get coffee and a donut and I just went in to use the bathroom. I was waiting in the car with her when an officer tapped on my window. He asked me “who is disabled here?” I said “I am?” He rudely asked me “what is your disability?” I DIDN’T need to answer this arrogance at all but I was so caught off guard and told him about my oxygen and then he smuggly said “well why isn’t it on?” … as if that was ANY of his business at all. Most frustrating thing I’ve ever experienced, especially with an authority figure who I usually have so much respect for-
Geez Brittany, your experience with an officer was much more offensive. I can’t believe he treated you in that way. In my case, and maybe in yours too, I wonder if it’s a reaction of embarrassment. They probably weren’t prepared to discover that we had valid reasons to be parked in a handicap spot. The best we can hope for is that they approached people with a different attitude from then on. I too have so much respect for police officers and our two experiences are not a reflection of all law enforcement.
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Colleen,
my thoughts exactly ! I really hope that people who react this way to those with invisible illness or are judgmental and ignorant can learn from the hurt they cause. Even though some people are just downright miserable and are frustrated or upset in their own lives, it still doesn’t make the hurt any less when we are on the receiving end of things. I have spoken up so much about invisible illness in the past and think a lot of people still need education and to be put in their place. I hope one day things like this don’t happen and people aren’t judged by what’s on the outside. -
Oh my, Brittany!
So sorry you had this experience, that officer definitely must have felt bad when you told him about your oxygen, but then to question why you weren’t using it, just insane and so insensitive. You are correct, it was none of his business.I also respect police officers , but then hearing these experiences you and Colleen shared, just makes me think that there are some insensitive people in all areas. I’ll continue to respect police offers as these were just a few “ bad “ experiences.
I mean, maybe they were having a bad day , who knows but still doesn’t it make it right and sure doesn’t mean that their actions didn’t hurt.
Kudos to you both ! Education is key and every person we can educate, hopefully makes it better for others living with invisible illnesses.
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Jen, those little PH cards really do come in handy, don’t they? I use to get upset when people would make comments that my son didn’t look sick, but another PH mom suggested that I use those experiences as a teaching moment. Handling annoying comments that way was emotionally better for me because I would walk away feeling a little less frustrated.
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Yes they do, Colleen!
I know if I try and “bite my tongue” and educate others when things of this nature happen, it’s better for my overall stress as well. Great job!
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Jen, I have to admit that those handy little cards didn’t always get pulled out of my pocket. Sometimes it’s just too hard to deal with the comments. One time I ended up in line with a school mom and she made the comment, “Oh, Cullen looks so healthy!” Well, we just received the news that he was actually declining. Not my best moment…I glared at her and without a word, walked away and got back in my car. It was just too much at that moment and if I tried to respond I would have started crying and I wasn’t up for that either.
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Colleen,
I have had these moments too where I just had to walk away and not even address the person or give them the satisfaction of my distress. Some people are saying these comments out of a good heart and really just are ignorant and don’t know, but when it’s malicious and evil it’s a WHOLE OTHER ballgame. I’m not as assertive when it comes to the general public, but I can tell you that if my sisters were there with me it would be an absolute scene! -
Brittany, I can imagine your sisters, once my baby sister had us kicked out of a karaoke bar as one man said something rude about my O2 and it was ON….she went in total defense mode and was ready to brawl with what we later found out was a Sheriff!! She is not a big girl and this guy was pretty stout,hehe
My Daughter and Hubby are the same, I tend to “overlook” and ignore comments at times, but not them…hehe
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Jen,
my sisters are the same way ! Very protective of me. I had an altercation with a few people that made some ignorant comments to me. One person asked “is this the Grey’s Anatomy convention?” LOL I thought it was funny. My sister on the other hand was immediately like, “what did you just say!?” and absolutely lost her mind on the kid that said it hahaha! In a way it feels good to be protected and know that others have my back! -
That’s funny Brittany, your sister sounds a lot like Cullen’s brother. Cullen is a very layed back, not easily rattled type of guy and his brother is the complete opposite. When they were in grade school apparently there was a boy verbally picking on Cullen every day. He never mentioned it to me because he really just didn’t care. I think he felt like he had bigger problems in his life than wasting his energy on this kid. I found out through his brother that this was happening because he was furious and wanted to warn me that he wasn’t going to keep quiet anymore when he heard this bully saying something to his brother. Yes, very protective!
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Your son seems like he has the same laid back type personality that I have. I also feel like a lot of this personality trait of mine is because I have just been through so much in my life that I don’t have time for the petty drama or the little games people like to play. I’m too aware of actual hardships in life to care sometimes hahaha! But I feel like the protective instincts are there from our loved ones because it’s the one area of our life they feel like they CAN protect us ! 🙂
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Yes, Colleen, I feel like I am the most laid back of the three of us sisters, and as you mention, I figure I have bigger problems, that I try to tend to. LOL
Glad to hear that Cullen has someone to protect him as well, well as far as siblings, heheThanks for sharing.
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LOL Brittany, I can imagine, the same with that altercation as I just laughed it off, but my baby sis , not used to being around me in public and hearing the comments was not happy, to say the least. It sure is good to know they have our backs!
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Colleen, I, too, have just walked away on occasion. Some days it is just too much and as you said, I would probably cry and work myself up . These days , I feel ashamed of myself, but we deal with so much, that one rude and insensitive comment can really frustrate and break us.
You’re not alone!
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Exactly Jen,
It’s like you’re reading my mind today. Sometimes it just takes that one rude comment to really send your emotions in a spiral. Like you said, we don’t know what the insensitive people might be going through but they ALSO DON’T know what we have been through and the kind of day WE have been having. Our emotions matter, always. -
Well Brittany, we just think a lot on many things, hehe
And yes, I ALWAYS just say I am a Hott Mess…” All Aboard”….aren’t we all?
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Jen,
My thoughts EXACTLY when you said, “Education is key and every person we can educate, hopefully makes it better for others living with invisible illnesses.” It is what drives me to speak up about my condition and invisible illness. I have been on both sides of this. I have had equipment and still sometimes use equipment that makes my illness more visible, but when it’s invisible that’s really when the questions happen an the inappropriate an insincere remarks occur simply from those who just don’t know any better.
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Wow, Colleen! I’ve never been approached by a police officer for parking in the handicapped reserved spots. That’s terrible and you would think the police offers would be more sensitive than that. I’m so sorry that y’all had that experience.
I’ve been approached more than once by older adults and once by a random lady just walking into the store. She asked if the placard was mine and then continued to ask why. I definitely was annoyed to say the least but I also handed her a little card on PH education and told her to remember, not all illnesses can be seen. Although , I was wearing oxygen !
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Jen,
Good idea with the card ! Is this something that you made or is this something that was given to you? The only card that I have is my pacemaker card that shows the make and model of the pacemaker and proves to airport security or other security that I have one and that I’m not allowed to go through medical detectors. I NEVER usually even get asked to see the card. I just simply state “I have a pacemaker so I can’t go through the detectors or get wanded” and usually nothing is asked after that. I’m grateful that has never been questioned, I mean WHO would actually make something like that up at my age!? -
Brittany, those cards are from some free resources available at PHA. Here is the link, if you scroll down, you should find them.
https://phassociation.org/pha-free-materials-store/
Also, I wish we were making things up, but WHO even does that and asks that ? Just insane!
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Thank you so much for the link Jen! I feel like this would be great to have for other conditions too! I know the ACHA has little handbooks that people can write their medications, pictures of their heart/ heart condition explained etc in case of emergencies. Having something like this on hand would be great to not only educate others in a professional way but to keep from getting any more angry, it’s like “here’s the card… educate yourself” There are so many people I would love to pass out handmade brochures to on my body and its chronic conditions hahaha. Like a road map to me LOL “Welcome Aboard the Hot Mess Express!”
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