The Things They Say...

Melissa Community Member
  • I've often heard people mention that people in wheelchairs are ignored, or that people don't make eye contact with them. In fact, because I've read this so many times I try and make a conscious effort to look someone in a wheelchair in the eye while I try to help them to the best of my ability in whatever way I can.

    This has been an interesting year for me. I have found myself wearing a corset, a couple of bone stimulators and a cam walker (a boot from my foot to my knee.)

    I haven't had the situation with people ignoring me, in fact, I have had the opposite and every where I go I get questioned. What did you do, what is that thing, what does it do, is it helping, how do you deal with the heat....until I pretty much feel like I have given every stranger within a 50 mile radius my life story.

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    As I have gotten sicker my life has become much smaller and as you can imagine, I don't even want to tell the people I like about my health for fear of unasked for suggestions or opinions. Telling my personal information to people that I don't even know just makes me feel uncomfortable.

    Can you imagine every time I tell someone "I have rheumatoid arthritis and I had an ankle fusion" the look of confusion or horror. God forbid I mention this is my second surgery, they look at me like I have two heads.

    I guess I just don't understand why my wearing a boot gives anyone the invitation to question me, even if they are just curious or trying to be nice.

    My health is not my choice, this wearing of the boot isn't something that happen because I was having fun skiing and broke a bone, or I tripped over something and sprained my ankle. This wearing of a boot is because I'm in the fight of my life to get some kind of control over my health and I feel like I deserve some privacy to just live my life, even if it includes two very odd looking bone stimulators.

    I've always been about education and getting the word out about RA but now that I have worn a very obvious medical device for a few years (on more than off) I just want to blend into the background.

    I am so much more than the boot I wear and if you find that you want to start up a conversation could you please remember that I have a right to privacy and sometimes I just want to be someone other than the girl fighting RA or the one that has had 2 surgeries and is scheduling another one for January.

Published On: August 09, 2011
12 Comments
  • Lene  Andersen
    Health Guide
    Aug. 09, 2011

    is interesting about this topic keeps coming up. We had another user post about the same issue not too long ago (unfortunately, I can't find the link right now). I mentioned at the time that I think it's much like the way pregnancy seems to remove any sense of personal boundaries and privacy - strangers come right up to you and put their hands on your stomach...

    RHMLucky777

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    is interesting about this topic keeps coming up. We had another user post about the same issue not too long ago (unfortunately, I can't find the link right now). I mentioned at the time that I think it's much like the way pregnancy seems to remove any sense of personal boundaries and privacy - strangers come right up to you and put their hands on your stomach as if it's public property. In the same way, having invisible illness or disability makes you sort of public property. It's as if it makes people feel it gives them the right to ask questions they would never ask of someone else (I've used a wheelchair for 30 years and can very much relate to this). You get treated differently, it's as if it removes the respect that comes with being an ordinary grown-up and in some way reduces you to a much younger status. And then there are the times where you get ignored.

     

    A friend of mine once for one of the mall wheelchairs because he wanted to see what it was like and reported that people don't have eye contact. I was astonished. Because I had no idea that strangers have eye contact with each other - after using a wheelchair most of my life, my experience was completely different.a very small percentage stare, but most of the time, I might as well be invisible. I want to thank you for being one of the few who make the effort to bridge the gap.

    • Melissa
      Aug. 09, 2011

      It's funny because most people think they are just nicely starting a conversation with someone standing in line waiting. It really doesn't occur to them that they are aksing very personal questions.

       

      I find that I very rarely ask a pregnant woman anything about a pregnancy. I figure if they start giving me details, it's free game.

       

      I used to be...

      RHMLucky777

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      It's funny because most people think they are just nicely starting a conversation with someone standing in line waiting. It really doesn't occur to them that they are aksing very personal questions.

       

      I find that I very rarely ask a pregnant woman anything about a pregnancy. I figure if they start giving me details, it's free game.

       

      I used to be pretty open about what was going on in my life but it seems the more issues I have with RA the less "out there" I'm comfortable with. Maybe its just trying to protect myself.

    • Lene  Andersen
      Health Guide
      Aug. 09, 2011

      I found it! It was Ish who posted about the privacy issue.

       

       I think  your impulse to keep things to yourself could also be related to wanting part of your life to not be invaded by RA. When there's lots of stuff going on related to my RA, fibromyalgia or disability, I find I get quiet about it in certain situations. That doesn't mean I don't...

      RHMLucky777

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      I found it! It was Ish who posted about the privacy issue.

       

       I think  your impulse to keep things to yourself could also be related to wanting part of your life to not be invaded by RA. When there's lots of stuff going on related to my RA, fibromyalgia or disability, I find I get quiet about it in certain situations. That doesn't mean I don't complain to people I trust - I do, I believe it helps to share when things get hard - but I get very careful about putting up walls between the different spheres of my life. Having a couple of places where my RA/fibro/disability/pain levels don't come up can be wonderfully restful. And it's often that break I need in order to continue coping well in the rest of my life.

  • Ratnapriya
    Aug. 10, 2011

    Let me share my experience. I walk with a elbow cratch in one hand when I go out on the streets but not in my working place. This is more to tell people do not push me. Ten years with RA, walking with a cratch in public and that too in India can be varied experience. In India, people are in general more intrusive not unkindly but really kindly. That makes it...

    RHMLucky777

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    Let me share my experience. I walk with a elbow cratch in one hand when I go out on the streets but not in my working place. This is more to tell people do not push me. Ten years with RA, walking with a cratch in public and that too in India can be varied experience. In India, people are in general more intrusive not unkindly but really kindly. That makes it very difficult to tackle such questions. When someone kindly wants to help and at the same time bombarding me with questions regarding my condition, I found it difficult to handle. Over the years I have been able to identify genuine kindness and derogetory pity. My answer is the same " I have some problem with my legs". Only my tone varies from soft to brisk depending on the mode of the question. For people too eager to help, a sweet thank you is followed by "I prefer self help". It works most of the time with the stranger moving away with some respect for my determination.

    Nevertheless these questions can be really embarassing at times.

    Ratnapriya

    • Vanessa Collins
      Health Guide
      Aug. 11, 2011

      It seems like it never fails that when I really am hurting and need help, no one offers it.  When I don't need it and I am feeling so good about being independent, people want to help. Go Figure!

       

      Blessings,

      V

  • suzzy
    Aug. 09, 2011

    i guess its the people that dont understand an they dont know about RA. heres me one day i can be the normal person an maybe about 2 hours i caint hardly do a thing.an these day in time people dont have time to hear the full story or dont have time to care , we live in a rush world now, an caring , waiting, is out the window. an when you do find that person...

    RHMLucky777

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    i guess its the people that dont understand an they dont know about RA. heres me one day i can be the normal person an maybe about 2 hours i caint hardly do a thing.an these day in time people dont have time to hear the full story or dont have time to care , we live in a rush world now, an caring , waiting, is out the window. an when you do find that person who seems to care an they ask an you start telling them what they asked you about then they relate it to something almost like what they had. i dont have the answers an i wish i did. its like we are a different breed of people or something.i have learned  to help an try my best to help people with disabilty.i myself is slowing coming to the truth that i have disabilty an its so hard to take, but thats where your true friends come in. try an not worry about the person in line what they ask or say. i know sometime its hard not to. i get to the point of just saying oh its something silly that i did an leave it at that i hope you have a wonderful day God Bless

    • Vanessa Collins
      Health Guide
      Aug. 10, 2011

      Hi, Suzzy,

       

      I do the same thing if I am in line at a store and a stranger starts talking to me about why I have my cane or whatever.  I just say something like, "I have some knee and hip issues."  Usually that is a satisfactory answer for them, and something they can understand.  Honestly, RA is a complex disease.  How can we expect...

      RHMLucky777

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      Hi, Suzzy,

       

      I do the same thing if I am in line at a store and a stranger starts talking to me about why I have my cane or whatever.  I just say something like, "I have some knee and hip issues."  Usually that is a satisfactory answer for them, and something they can understand.  Honestly, RA is a complex disease.  How can we expect people to understand?  I wish some of the drug companies would run more realistic ads.  Something that would make the general population understand that even tho we may look well, we are not well.  Something that would help the public understand that someone with RA may feel fine one minute, and absolutley awful the next.  Something that would help people understand that we struggle every day to be as "normal" as we can. How are you feeling this week, Suzzy?

       

      V

    • suzzy
      Aug. 10, 2011

      Hi V  im still tired but the heat here isnt so bad now i woke up this morning at 3 running to the bathroom still  . i still dont think its the heat thats giving me dirrhea. we are almost done with chipping an sealing which that will be good an  the bridge boys is coming up hopefully it will be for one day. then we can get back doing our stuff.which...

      RHMLucky777

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      Hi V  im still tired but the heat here isnt so bad now i woke up this morning at 3 running to the bathroom still  . i still dont think its the heat thats giving me dirrhea. we are almost done with chipping an sealing which that will be good an  the bridge boys is coming up hopefully it will be for one day. then we can get back doing our stuff.which will be mowing or hot mixing. but hopefully these cooler temps will be around for awhile. i got appointment when my regular doctor this thursday maybe he can tell me what going on. how have you been doing? has the mtx giving you any more problems ? did you get all of my emails? we have an insurance meeting in october im going to be asking question now that i know what on my plate.

    • Vanessa Collins
      Health Guide
      Aug. 10, 2011

      Hi, Suzzy,

       

      If you are still running ot the bathroom, I think something else is going on besides the heat.  Sometimes Arava can cause that.  How long has it been since you had your blood tests done, Suzzy?  I will be interested to see what you PCP says about all that.  I did not get your emails.  Unless my husband didn't know...

      RHMLucky777

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      Hi, Suzzy,

       

      If you are still running ot the bathroom, I think something else is going on besides the heat.  Sometimes Arava can cause that.  How long has it been since you had your blood tests done, Suzzy?  I will be interested to see what you PCP says about all that.  I did not get your emails.  Unless my husband didn't know what they were and deleted them by mistake.  I will have to ask him.  Oops!

       

      Blessings,

      V

    • suzzy
      Aug. 11, 2011

      july the first when i last seen my rheumy he did blood work then. last nite an this morning it was a little firm . i will send the emails this morning again. i hope it aint nothging else

    • Melissa
      Aug. 10, 2011

      I pretty much do the same, quick answer, no big deal. It just seems to be the people that ask me so many questions. I wish I could come up with a snarky response but then I would just be angry with myself for being rude Laughing

       

      I think Lene really hit it on the head, the harder time I'm having coping with RA the more intrusive the questions seem to be to me....

      RHMLucky777

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      I pretty much do the same, quick answer, no big deal. It just seems to be the people that ask me so many questions. I wish I could come up with a snarky response but then I would just be angry with myself for being rude Laughing

       

      I think Lene really hit it on the head, the harder time I'm having coping with RA the more intrusive the questions seem to be to me. I guess even though I feel I'm portraying a perfectly normal outward appearance, that boot or bone stimulator gives me away. Maybe I need a camo cover for it...:)

       

      m

    • Vanessa Collins
      Health Guide
      Aug. 10, 2011

      Hmmmm.  A good answer....how about, "I'm doing research on RA", or "I test medical equipment for a living."  This could be a fun exercise.