I’m sick and disabled AND I’m allowed to have some enjoyment in life.

I do have a facebook. And today, I watched movies on television practically all day. I can’t remember the last time I did such a thing. It’s very draining for me to watch movies, but commercials help as I can mute and rest every 10-15 minutes to avoid overstimulating my nervous system. So today, that’s what I did!

I mentioned this on facebook.

Someone replied with, “I wish I could have a lazy Saturday.”

I deleted the comment immediately.

It strongly struck a nerve with me, for this and every other time someone has said anything to the effect of, “I wish I could just do [insert something that people usually find relaxing] instead of [whatever hard “real life” thing they’re doing].”

Now, I know this person, and I know they didn’t intend anything offensive or upsetting by it, but I highly doubt they thought it through, making a comment like that to someone who is chronically ill and disabled. And I do understand it’s a normal, knee-jerk reaction from someone who is very busy and exhausted. But you just don’t say that to a group who struggle daily with finding enjoyment in part because their primary stigma is of being “lazy welfare moochers.”

It brings up every bit of elitist ableism we’ve suffered over the years that constantly tries to strenghten the divide between the sick “us” and the healthy “them”, in order to affirm the following:

You can only do “sick people” things, because real sick people don’t have any fun;

You have to prove to us that you are actually ill by acting ill;

You’re not allowed to be anything other than miserable because if you really felt so bad then you’d show it every second of the day;

I’d smile too if I “didn’t have to” work;

You are different, we are not the same, so be what I expect you to be.

It alludes to all the judgmental remarks and accusatory looks we’ve gotten when we’re seen buying a movie instead of a bottle of medicine, a chocolate bar instead of a salad, a CD instead of something “medically necessary,” or spending any small amount on something for us instead of putting it into savings; a savings which, I assure you, is only dollars a month, at best.

It alludes to all the doctors giving us strange looks when we still manage to laugh in their office; people in parking lots giving us dirty stares because we park in the handicapped spaces (with a tag!) but still don’t “look disabled enough” to be there; and the fact that the government literally spies on some during “good days” and uses that to argue a legal case that our payments need to be stopped.

So, no. Don’t say things like, “I wish your relaxation was all I had to worry about,” unless you really think being unable to function due to disabling illness 95% of your waking hours that is every so often intervened by very short moments of reprieve where you’re actually able to enjoy yourself, sounds like your idea of a vacation.

WARNING!!! Things NOT to say to someone with a disabling chronic illness: ...but you don't look sick ...everybody gets tired ...you're just having a bad say ...it must be nice not having to go to work ...i wish I had time to take a nap ...if you'd get out more ...you're just getting older ...if you'd get more exercise ...it can't be that bad ...it's all in your head ...you're just depressed ...there are people worse off than you ...you'll just have to tough it out ...you just need a more positive attitude ...this, too, shall pass (I wouldn't wish what I have on anyone, but unless you get it, you just don't get it.)

a rainbow at night

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12 thoughts on “I’m sick and disabled AND I’m allowed to have some enjoyment in life.

  1. I can not even begin to say how much I connected with you in this post! You put into words exactly what I have been feeling for so long! Thank you thank you THANK YOU!!!

    An amazing post here, thats for sure. Its also going into my favs for future reference! Thank you!

    I hope that Today is a good day for you too and that you won’t be “punished” to having a good day or over-doing it!

    Blessings to you! <3

    Like

    1. Thank you so much! I’m glad someone was able to relate to it, and that I know it’s not just me!

      I’ve started out the day with somehow oversleeping several hours, so we’ll see how the rest of it goes, haha. Thank you again, many blessings to you as well <3

      Like

  2. I can understand and relate in a different way.
    As you know how I have that roomie situation where she’s insisting she’s so “afflicted” and cant work, and that drives me SO freaking insane while there’s people in our world that are truelly afflicted with invisible sicknesses and ailments. It makes me mad that she even dares to be jealous of her sister who has been diagnosed with fibryomyalgia and wishing she could “jump on the train to easy street” as she’s said.
    Sometimes, don’t you wish you could trade bodies with that person? Obviously she does not realize how lucky she is to be Abled Bodied. >_>

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    1. …The thought of someone saying that fibromyalgia is a “jump on the train to easy street” makes me want to vomit. Since it’s a common MISdiagnosis, it might not even BE fibromyalgia, and might be something more serious (i.e., autoimmune or infection, in other words, progressive), which makes it even LESS of a picnic. I am at once angry and heartbroken, that someone is so.. messed up, if you will, that they could make such a statement.

      And I don’t wish I could trade with someone able bodied unless they were in a state of taking care of themselves, physically AND MENTALLY. Most people don’t stop to take care of themselves, and better themselves from the inside out, unless they’re forced to… I think I’d rather be physically ill than mentally destructive, as the person you’re referring to obviously is. Then again, I can’t just get over my disease, like she could her maladaptive thoughts with some adequate therapy, so you may have something.

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  3. Hahahaha! I just spent about three minutes trying to figure out how to comment! /brain fail

    I understand what you are saying this, and I’m also glad you got to watch movies. :3

    “The same looks that say “you have to prove to us that you are actually ill by acting ill,” the ones that say “you’re not allowed to be anything but miserable because if you really felt so bad then you’d show it,””

    Yes this, pretty much. :| I get this all the time at the supermarket. I don’t ~act or look like I’m disabled~ most of the time when I use my food stamps, so therefore I must not be really sick, and I must not need the handicapped space, etc etc. :[ So you want me to fake a visible handicap when I don’t have one that day? What! XD

    Anyway I’m sorry about what that person said. *hugs* And again, I’m really glad you were able to enjoy your Saturday. :) Hopefully more times like this are coming up in the future! :D *cheers you on*

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    1. Oh dear! I’m sorry, the new layout is a bit different than my old one! ;)

      I was, too! It was great!

      Ah, that’s such a good point. We are.. well, physically miserable so much of the time. How I love it when my friends and family are able to be HAPPY for me on my good days instead of being inexplicably jealous of my “free time”…

      We should plan a movie night! <3

      Like

  4. AMEN to this post, LOL! What drives me really crazy is that my family members all act sooo dysfunctional about my illness, and all in different ways. I have an aunt who is also disabled by chronic autoimmune illnesses and she understands, but she can be very negative and the saying “misery loves company” applies to her in every way. The rest are all healthy and able bodied and react either by denying my illness (my dad said I was just really out of shape from not exercising, I was so shocked and hurt- this was after I told him about ME and that I am in class 3 heart failure!) or by encouraging me to deny that I am sick or the severity of the illness. Then there is my mom, who is a pathological Narcissist, who apparently has been telling everyone who will listen that her daughter is dying. Don’t get me wrong, I very often feel as if I am dying, but she has no idea about that lacking empathy as she does, and is just saying those things to garner attention and sympathy for herself. Thank god I don’t have to live with her, knock on wood!!! I am incredibly lucky to have the world’s most loving and supportive husband, though I feel guilty for being a burden to him. I know it is out of my control, but I haven’t worked my way around to accepting this myself yet. One of my greatest passions is horses and I have been so incredibly lucky to finally get a pair of wonderful horses of my own which I haven’t had since I was a teen, and now I can’t ride them or even just make it to the barn to visit them. They probably think I have abandoned them, poor guys! They are at a great boarding farm and are getting excellent care but they are not being regularly handled or ridden and it breaks my heart. I just got them when my health finally failed me and my body seemed to betray me and they slipped from my hands like a mirage. Fortunately, they are young, but they really need regular handling and my goal is to be able to get back out to the barn. Just being around them is incredibly healing if I could just get there. Ultimately I really want to be able to ride again but I will take whatever I can get at this point! Their names are Storm and General, and there are pics of them on my facebook account. They are my therapy horses! :-)

    BIG hugs to you and thank you so much for your wonderful blog!! Thank you also for creating a safe space to share this weird journey!

    Like

    1. Oh goodness, I am so sorry to hear you have heart failure. :(

      I think for SOME of our family members, they can’t bear to think of us being so sick and there being so little information out to tell them how to react. I think, sometimes, they want to believe the parts that say it’s not real, so they won’t have to deal with the reality that we are sick and some of us, dying. But that doesn’t get us anywhere, now does it? The most we can do is tell people what we need from them, because it helps them feel like they’re making a difference. And if they can’t be there, Thank God for those who do understand and don’t try to punish us for being ill–like your lovely husband.

      And my goodness… I’m in “recovery,” if you will, from dealing with a former narcissistic “friend” for seven years. Once again I am so sorry… I know exaclty what you are talking about. My narcissist would tell everyone, “You won’t believe how sick my friend is!” and yet couldn’t even be bothered to visit when she was five minutes from my house every day; she made it seem like I had to be worthy of her time, but she loved the attention she got from others about being “the friend of the sick person, look how caring I am”… It’s pathetic and so sad.

      I doubt your horses think you’ve abandoned them–they live in the moment, and I’m sure they enjoy whatever time they get with you. Animals just “know” and they can tell when we’re not ourselves. They are such wonderful therapy!

      Thank YOU for sharing YOUR story! It’s always comforting in some morbid way to hear similar experiences, and thanks again for dropping by and leaving a comment. It’s nice to know my rambling helps make a difference in someone’s life :)

      <3

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  5. I’ve felt the same way … I’m on fb too and am at times concerned about being judged.

    For example … I love to create art and didn’t do any non-work-related artwork for a while. But things like art are ESSENTIAL for me, even if my hands hurt doing it, just to keep that degree of joy in my life. Then there’s the concern about someone thinking … “If you can do XYZ why can’t you do ABC? Obviously you’re feeling fine if you did XYZ” … truth is, when I do xyz, it takes a toll on me, just as abc does … it’s just that I really need to do things here and there that bring me to life and make my spirit smile, otherwise having a chronic illness could feel like “too much” and be a total bummer!

    I’m always concerned about what I let the world know cuz I don’t want to sound complaining and on the flip side, I don’t want to seem like I’m fine when I’m not.

    Living with chronic illness brings up a WHOLE boatload of other things to dance with, right? All of these concerns you never even thought about before!

    Thank you for your honesty, it’s so helpful!

    Liked by 1 person

    1. Even after writing this almost a year ago, I still feel this way, but it’s gotten easier. I just delete comments that are anything like that image I added to the post, lol!

      Ah, how many times I’ve heard that from my misunderstanding (or not wanting to understand) family members: If you can do this, why can’t you do that? Sometimes they really do just want to know what the difference is, and that’s fine, but others state it with a condescending attititude, and It’s hard not to take that personally, because it insinuates that we’re trying to get out of doing work, or finding excuses, and my goodness, just.. no.

      Just becuase we can do something one day, doesn’t mean we can do it the next day…or even the next hour! I had a day last week where I sat up and had (needed) coffee so I could get to the store, and then tried that this week (which is apparently my Lyme flare) and my nervous system completely fell apart! It just wasn’t having it.

      I hope we can both learn to let the insensitive comments roll off our backs, knowing that we are genuine people with real, valid emotions and highly variable abilities, who don’t always have to justify our disease when we can barely explain it, ourselves.

      I paint as well (sometimes I post them here, but usually on Twitter), and just yesterday someone asked me why I was doing it if I felt so bad. Of course it was because it takes me away from the pain and discomfort for a while. I’m so glad you also have an artistic outlet.

      Thank YOU for YOUR honesty! I’m glad to have a forum on which to bring up these topics for everyone else who deals with it. :)

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