Invisible Illness and the Public: She Hit Me with Her Cane | Rheumatoid Arthritis Warrior

Invisible Illness and the Public: She Hit Me with Her Cane

cane assailant Southwest Airlines OrlandoTomorrow I’m traveling to San Diego for the ACR annual meeting. I’ll be taking a proverbial chill pill (and some real meds) and hoping all goes smoothly. For weeks we’ve done all we can to be ready! This story occurred a couple of months ago…

Did anyone ever give you a dirty look for using handicapped parking? Or express disbelief that you needed help? Or refused to share the preferred seating on a bus or train?

Avoiding crowds and public spaces is one solution, but it’s not always possible. And it’s not a good option if we have places we want to go. So, I’ve learned certain strategies and precautions to make things as smooth as possible and avoid being knocked down.

1) Allow plenty of time and patience. That way, if the crowd rushes in front of you for the elevator or the shuttle, you can wait for another. And you can stop to rest when you need it.

2) Ask for help. Whether it’s a restaurant where you’d be comfortable in a different booth, or you need someone to put your groceries in the car, speak up. Let the airline staff know you need to board early or to have a wheelchair available.

3) Avoid mean people. This one is tougher. You can’t just make a list or plan ahead for bad people to stay away.

She hit me with her cane

On our way to Phoenix this past May, Katie Beth and I took every proper precaution. We notified the airline ahead of time that I was a passenger requiring assistance. We arrived early, and let the gate personnel know I needed to board early. But that didn’t prevent the worst kind of ugliness from a stranger who didn’t think I looked deserving of help.

I sat and waited close to the desk as instructed. When the Southwest staff called for pre-boarding, I stood up. Two women who were sitting about 20 feet away ran forward and shoved in front of me. One of them glared at me, and the other struck me in the ankle with her cane. They complained loudly to the Southwest staff that I should not be there and they should be first. The Southwest woman and I were both dumbfounded, but when I said, “She hit me,” she just told everyone to calm down. I think she was afraid it would escalate.

The “running” women were already in the front seats by the time KB and I made it down the ramp and onto the plane. We walked by without looking at them. Then a man approached us with his business card from Workers’ Comp in New Mexico. He said he saw what happened and was willing to be a witness of my injury.

After we arrived in Phoenix that night, KB and I stopped to rest and get our bearings in the airport. The witness stopped to talk with us. I joked about how funny it was that the woman with the cane had dashed 20 feet as fast as I could stand up, and that she still felt she deserved pre-boarding more than I do because she can’t see my illness and I don’t carry a cane. I explained to him that I can’t even carry a cane because my hands and shoulders are as bad as my knees and feet.

Rheumatoid Disease Awareness Card - sample

Then he told us he guessed I had RD when he first saw us in Orlando. He is the primary caretaker for his mother-in-law who also has RD. I gave him some an RPF awareness card (click to enlarge) and asked him to send her our best. He had awareness you can only get from living with RD, so he saw what happened with eyes of compassion that others around us missed.

Of course I didn’t need a witness because I didn’t sue anyone. The RD in my right ankle already hurt worse than the left one that had been hit. KB and I are making lots of preparations to travel to San Diego for ACR and we’ll prepare as well as possible. But I’m reminded that we are working for long-term change that will improve awareness to make things better for all people with Rheumatoid Disease.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

46 thoughts on “Invisible Illness and the Public: She Hit Me with Her Cane

  • October 23, 2013 at 7:21 am
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    I am outraged that Southwest airline didn’t pull the lady who hit you with her cane aside and call security. I don’t like a fuss and usually avoid issues and don’t file law suits but the meanness and hate of the lady in question leaves me indignant and angry. She should be banned from flying that carrier! Perhaps she had dementia but still!

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  • October 23, 2013 at 8:02 am
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    Sorry Kelly,but that’s the way most people are now days.
    The only time I leave my Home is to go to the doctor.
    My wife does all the shopping.
    Ihave been to the store twice and always park in a regular parking spot.If you really do haveR.D. you can always tell the ones that are faking it.
    I have had R.D. for over two years.
    Now I am having trouble with my eyes.
    Do you have any information about R.D. and eye sight?
    Please take care.
    Bob

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    • October 23, 2013 at 9:04 am
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      Bob, search the word eye to read some things that are already here – a few blog posts discuss it & that’ll probably bring up some of the patient stories also. I’ll do a more complete post on eyes soon. See the search box up on the right of the page?

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    • October 23, 2013 at 9:11 am
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      You can always tell the one’s who are faking it….Really? This is just as bad as Kelly getting hit with a cane. This is the problem, people shouldn’t judge because they don’t know the whole story. People shouldn’t judge period. There is an old saying “Don’t judge a book by its cover.” I understand this statement more so than I ever have in my life.

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      • October 23, 2013 at 9:22 am
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        Lee, that is so amazing to me you said that too. I remember writing that a few years ago on the blog – living with this disease makes you SO aware that we cannot know what others are going through.

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  • October 23, 2013 at 8:33 am
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    I have been where there also, I just go with the
    flow and do not request any special help. The same
    thing happens with handicap parking. Just because
    it doesn’t show, people feel I am abusing it! I have had RA for 20 years, sounds like you and I are the same, so very painfull but you don’t see it. I also just finished chemo for ovarian cancer, it takes away the RA, they don’t know why. But I always wonder if there isn’t something there to look at. Anyway my RA is back as it was before. I have triedmany things, and can’t get into studies because I have had cancer. So it’s hard for me. Love reading your posts.

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  • October 23, 2013 at 8:58 am
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    My mouth dropped open when I read what that woman did to you. I can’t even imagine the pain that must have caused you. You handled it much better than most I can tell you that. I was imagining all the terrible ways that could have gone down, especially if it were me or my mother for instance. But you handled it with grace just as you do with your RD and getting the word out to others.

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    • October 23, 2013 at 9:01 am
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      honestly Jaemae, I’m so used to people treating me unfairly w/regard to my RD, I’ve developed extra suck-it-up super-powers. Your sweet words about grace remind me that I need to forgive her too so the offense of it doesn’t stay with me.

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  • October 23, 2013 at 9:00 am
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    People can be so ignorant! I would love to create, or buy, a bumper sticker that says “I support those with invisible illness!!”

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  • October 23, 2013 at 9:09 am
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    I have refused for years to give in to the “handicap” of this disease and sufer through being sure that someone else was in more need than me.Especially someone that had the need to hit someone with their can just so they could be first.
    BUt this August I was diagnosed with a type of Leukemia and had to go off ALL of my RA drugs except prednisone and while I am being treated with a new scary drug and dealing with my RA rearing it’s ugly head I am also dealing with a new disease. And the side effects of the disease and the drug mimic RA to a sense so who knows why I hurt- I just hurt.And now I can’t breathe!
    So I may have to give in and try to help myself instead of being so proud.
    But meanness is still not acceptable.

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  • October 23, 2013 at 9:11 am
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    My prayers go with you and KB for better travel this time! It takes all kinds to make the world go around I guess. But how wonderful the kind gentleman stopped to make sure you were OK..again Kelly, thank you for ALL you do! xo

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    • October 23, 2013 at 9:23 am
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      thanks for all of your support too Nancy. That’s what keeps me going when the going gets tough.

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  • October 23, 2013 at 9:28 am
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    Hi Bob….
    I was a little hurt by your comment…”If you really do haveR.D. you can always tell the ones that are faking it.”
    That is the point of an invisible illness. I know that there are times I park in the handicapped parking because I know that by the time I finish what ever I have to do in the store I will not be able to walk to a regular spot…so while I may look like I am walking fine going into the store, someone watching me stumble out would agree I needed it. Or the days that I use a cart to get through the same said store because there is no way I could manage feeding my three teenage boys without groceries that only I can buy. I have filed for disability because of my illness….not by choice, but because my Rheumatologist told me that if I didn’t I would be in a wheelchair in less than 3 years.
    My illness is invisible. Top that off with a Type A personality and a pastor’s kid mentality that says smile your way through everything and never let them see you sweat….and I am the poster child of an invisible illness. My disease is only now starting to respond to a biologic–after 4 attempts. I have had to have surgery already and am feeling the best in years…but I am still not who I was. I can’t clean my house in two hours like I used to…if I do go out, that is all I get done…but when I’m out, I know for a fact there are people who believe I am “faking” it.
    This whole illness is sneaky and tricky. It can make people look fine while the pain or the fatigue is unbearable. We need to be supportive of each other, and be cautious of what we say.
    Marianne

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    • October 23, 2013 at 9:37 am
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      I don’t think he meant any offense. But it’s such a good point – I’m trying to get the doctors to realize that they can’t tell how active a patient’s disease is by just glancing at them (or the tops of their hands). There’s a lot more to it than how it looks at a given moment.

      And interesting points about how some parts of our upbringing make us even more likely to hide our symptoms. We with RD are masters at that. I’ve written about that phenomenon on the blog. http://www.rawarrior.com/tag/pain_tolerance/

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  • October 23, 2013 at 9:46 am
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    I will admit, in the past I may have misjudged people that parked etc. in handicap spaces. Today I feel terrible knowing that I did this. I now wonder how many people I may have criticized, had RD, or worse. As Kelly said, needing a cane for when my feet don’t work, but unable to use one, because the hands, arms and wrists can’t support me, well that gets tricky. My grocery store secrets… Go alone when I have plenty of time, never wait until I am completely out of something (just in case I decide to stop and go home), take my own bags (plenty of them), instruct the bagger to use them all if necessary. I find that I can use my arms to carry the cloth bags easier if not to heavy. I use the same bags always for cold items, that way if I get home those bags get unloaded and if necessary the others wait. I shop at Publix, the staff is wonderful and help me with this. I know people probably make fun of me, I now realize that this is just a part of having an invisible illness. I pray that they never have to go through what we do. I try to hol my head high and be ever so thankful that for now I can still get out and shop, even if it’s a little weird.

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    • October 23, 2013 at 9:50 am
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      wonderful suggestions & attitude Rebecca. Thank you for adding your comments.

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  • October 23, 2013 at 9:54 am
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    I hate to say it, but I can see my own Mother doing that. I am sorry that happened to you.

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  • October 23, 2013 at 10:18 am
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    Kelly,
    I don’t have a “war story” as horrible as that, but I deal with this attitude daily in my job. I’ve tried to be proactive and spread awareness information but it falls on deaf ears. The disability management group is the worst of them all. They are supposed to be the most aware.
    Hope your travels go well today!

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    • October 23, 2013 at 10:20 am
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      That’s why I wanted to tell the story Amy. Because many of us deal w/ the attitudes daily. We need to raise awareness about RD, and being more open to knowing people have struggles we can’t SEE.

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  • October 23, 2013 at 10:28 am
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    I get the stares and dirty looks for parking (although not as often the older I get!), but love the embarrassment I sometimes see when I start walking–no, limping into the store. I understand the frustration of seeing people park in a handicap space and dash into the store with no apparent difficulty. I will occasionally say something if I see someone parked there without a placard. I’ve learned to say “you really need to display your placard. People might think you’re parked there illegally!” The funny thing is, if they’re really parked illegally, they get defensive and downright nasty!

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    • October 23, 2013 at 6:22 pm
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      People do get so defensive when they’re in the wrong. I’ve pointed at handicap parking signs when walking past people illegally idling there while waiting for the train. One lady actually rolled down her window and started hurling abuse at me. I’ve called the police on several occasions because people will keep misusing handicap parking if they keep getting away with it, leaving no spaces open for those of us who actually need them.

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    • October 23, 2013 at 6:46 pm
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      It’s sad how horrible people can be. I’ve had RA since 1982, when I was age 16, and handicap parking since 1987. You should see the dirty look an otherwise-healthy looking 21 year old gets when using handicap parking. Before my knuckle joint replacements, whenever people would give me grief, I would just hold up my gnarly, crooked hands and say “Trade you.” That always shut them up. Now that my hands are straight, that no longer works, but having a cane as a “prop” shuts most people up.

      I always use handicap parking when it’s available. I’m not going to get into the “someone else needs it more than I do” bit because it does none of us any favors. I can’t judge other people’s needs, only my own. Even if I’m feeling good, I never know if I’ll still be feeling that way when I finish whatever I’m doing that requires parking in the spot. I refuse to apologize for taking advantage of something that minimizes my pain.

      I’ve had my share of nasty people. One elderly lady glared at me and asked if I always parked in the handicap spot (when my placard was in clear view). I just smiled at her and said “Yup, all the time!” She stomped off into the store and I saw her at the customer service desk, probably complaining about me.

      Another time, a store employee actually came out when he saw my husband and me get out of the car in the handicap spot. He said quite pompously, “This is a handicap spot, you know.” Hubby was quite fit and athletic, so I can understand a bit of the attitude. I told him the placard was mine and he made a huge production out of strutting over to study my placard quite closely. Hubby and I just laughed and went into the store.

      On a few occasions, I’ve had people rudely demand to know what’s wrong with me. My usual response to them is, “My warranty expired.” It usually leaves them gaping and unsure of how to respond and it makes me chuckle, so I count it as a win. I’ve learned not to get uptight over it any more. Some people will always be obnoxious twits and I’m not going to allow them to get me down.

      It’s sad that the worst attitude I get is actually from the elderly or other handicapped people. Just because I’m not in a wheelchair (yet) doesn’t mean I’m not handicapped. In fact, it’s really irritating that a lot of handicap access is geared to those on wheels and not necessarily those of us who need shorter distances. Some HC spots are far away from the door because that’s where they located the ramps, so it’s fine for those on wheels but not so much for those of us who need less distance.

      I really don’t begrudge anyone their need for HC parking, but it would be nice for all of our needs to be taken into account. Wide spaces aren’t just needed for wheelchairs; many of us “walking wounded” need to be able to fully open car doors in order to get out. I have to roll forward a bit before I can stand, so the space is necessary. The same goes for airplane seating. I have a very hard time standing from a seated position in interior seats, so I always try to get an aisle seat.

      All we can do is take care of our own situation. It may seem selfish, but I don’t want anyone judging me, so I don’t do it to them, either. I don’t worry about other people needing HC parking more than me because I can’t know that by looking, just as they can’t know it when looking at me. RD makes my life difficult enough without these kind of issues making it worse. Too bad so many people seem to get joy from making other people miserable.

      (sorry for being so long-winded – this is an issue I feel strongly about)

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      • October 24, 2013 at 5:08 pm
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        Great post Tula about HC parking, I got a couple chuckles because I am still waiting for some verbal abuse from someone…none yet, just stares, esp since I drive a full size F150 (I have horses which I don’t ride any more due to RD…sigh). My biggest laugh (sarcastically of course) about HC parking spots is our big Orthopedic Center here where my rheum is at, has, count them FIVE HC spots…HELLO its an orthopedic center??? I have complained but it falls on deaf ears I think. Wishing you well!

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  • October 23, 2013 at 10:44 am
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    Kelly, I am outraged that you had to go through what you did with that woman. You showed class and dignity and that woman should be ashamed of her behavior. This woman “assumed” that there was nothing wrong with you because you don’t look sick. I have encountered this myself over and over since I was diagnosed almost two years ago. Just because there may not be any outward indications of our disease, people automatically assume there is nothing wrong with us. Maybe if they spent just one day in our bodies hunched over due to the morning stiffness, trying to do something as simple as turning a knob, trying to write without your fingers jamming, trying to eat an apple without your jaw locking up then they would realize you can’t judge a book by its cover.

    Kelly, I will have you in my prayers that this will not happen again during your upcoming travels. Thank you for the job you do. I would be lost in this disease if I had not found your blog. Thank you from the bottom of my heart.

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    • October 23, 2013 at 10:57 am
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      thank you Mandy. Greater awareness will benefit all of us so much.

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  • October 23, 2013 at 11:28 am
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    What a nasty woman! Your invisible illness is physical, Kelly. Hers is moral and ethical. I wasn’t aware that being ethically crippled entitled one to pre-board an airplane! Did Southwest at least treat you to an extra bag of peanuts?

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  • October 23, 2013 at 11:29 am
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    I had a similar incident. I was shopping at Whole Foods pushing my cart very slowly because each step felt like I was walking on marbles. This older guy (~70) pushes his cart into me, and when I look back expecting an apology, he says, “hurry up you are moving too slow”. I just turned around and continued on my pace. So, I am not surprised at your experience.

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    • October 23, 2013 at 11:31 am
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      Jannete, I believe you. Lately I must move a little faster (except for when I’m stuck & can’t get up), but I remember that happening several times the first couple of yrs.

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  • October 23, 2013 at 11:32 am
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    Kelly, I just want to echo what Mandy said. Thank you so much for all you do. I too would be “lost in this disease” without your blog, your information, your dignity and your humor. God bless you. Mean people will one day understand that their behavior has a cost attached to it and they will be so surprised when God judges them as they judged others.

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  • October 23, 2013 at 11:39 am
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    I have only been recently diagnosed with RD, although doctors in the past have thought I may have it. I am sero-negative, so my current rheumatologist did ultrasound of my hands and feet and saw the fluid and inflammation and was sure that the diagnosis was correct.

    I am appalled by what you went through. I probably would have burst into tears.

    I have a handicap placard, but only use it when things are really bad or if the other parking spots are so far away, I know I would not be able to make it back. On good days I try not to use the handicap spaces because I’m sure there are others who probably need them more (especially those with the wheelchair ramps who need the extra space).

    Both of my sons have autism, the oldest was also born with kidney failure. I get a lot of dirty looks if either of them have a meltdown. They have gotten better (especially the older one), but of course they look totally “normal” so people don’t understand why they behave the way they do and have no idea that my older son has fought for his life since the day he was born (thankfully he’s been proving the doctors wrong since them as well!).

    People seem to be so self centered now, I keep thinking, that’s why this world is so messed up. People only care about themselves and what’s theirs. I was not brought up that way and I’m trying to make sure my kids understand (to the best of their ability) that you be polite to others, you get out of their way if need be, you hold doors for people, etc.

    Today I’m in so much pain, I dread leaving the house. I have one doctor appointment and then have to pick up my son from school. I wish I could just crawl back into bed, but that hurts too. I’m so tired of hurting. I wish others could understand that even though I look fine, inside I’m far from it.

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  • October 23, 2013 at 12:16 pm
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    Kelly, this is horrible! I would have kicked her back!! Lol! Seriously, I think it’s a shame that others are so quick to judge what they don’t understand. I think we are all guilty of “making up stories” about others without knowing their circumstances. My RD is moderate, and I can manage on my own, but do love it when my son is home to help carry the groceries upstairs to our apartment. I try to explain to people, the word rheumatoid comes from rheumatic fever, and you know how you feel when you have the flu? I feel like that 24/7, achy and tired and like someone took a baseball bat to my hands and the back of my neck (and sometimes my knees and my foot, etc….) I try to educate people whenever I can, but there will always be some who just don’t get it.

    Likewise, I think there are a lot of people with disabilities walking around with BIG chips on their shoulders. My son works at a big grocery store here, Wegmans, as a cashier and he also does Helping Hands. These are the guys they call to assist shoppers who might need help getting their groceries to the their cars. He loves his job, he loves helping people like his mom, but one day a lady in a motorized cart complained about him because she thought he needed to drop everything and run over to help her.

    I don’t expect people to know what I am thinking, I don’t expect everyone to get out of my way, and I don’t expect them to know what is wrong with me. If I can, I take the time to educate them. (“No, this is not what your grandmother has….lol!) But what you experienced Kelly is the worst of the worst, I am sure you kept a cooler head than I would have! Thanks again for a enlightening topic!

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    • October 23, 2013 at 8:27 pm
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      Please understand before you read the rest of what I wrote here, what I am writing here applies as much to me as to anyone else. I just food for thought…

      I have read all the posts here and I would like to share a few thoughts I have.

      First, I feel it’s important to become very aware of your own self-talk, inner critic and yes- possible shame over your illness and disability. Now, observe whether you just got upset at that statement.

      Is there any possibly of some projection going on? How much of what you may perceive is another person’s attitude or judgment (of your invisible illness) is really your own thinking. The unstable and angry woman who rushed in front of her and (hurt her with her cane) is perhaps a difficult person with some mental handicaps regarding her ability to be socially appropriate- another handicap in itself. Even if you took it personally, she may be angry and aggressive to lots of people-handicap or not. Talk about mental illness! That is a huge struggle for some as far as having an invisible illness or even worse- a stigmatized one.

      In the past I rehearsed dialogues in my head many times as to what I would say to someone if they approached and confronted me as I pulled into a handicapped space. Then one day, I realized it was a lot just my own defensiveness that had been built up through the years, much before diagnosis and without support of others that understand. But then I looked around-no one was criticizing me. People actually were too preoccupied to notice. I have not ever had anyone approach me this way- but if they did, it would be a person with a problem that in some ways was bigger than mine.

      And if I may respectfully ask you if giving up a space for someone else on days when you can “get by” walking further is very productive for you? When in a flare, we can be so grateful to just get one thing accomplished that day that our world of possibilities (of what we would do if we did not have our illness) shrinks.

      Think about if you are being as supportive to yourself as you are willing to be sacrificial to others that you think may be “worse off” than you. If not, you may have hit yourself (symbolically) with a cane.

      In other words, on a “good day” of your illness- protect that level of health, energy and productivity by definitely PARKING in the handicap space! That energy is precious and you need to conserve it. It’s not selfish, it’s thinking past the disability to more possibilities. Even that frame of mind is healing…

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      • October 24, 2013 at 4:42 pm
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        You’re so right, Kathee. I think a lot of people really resist applying that “label” of being handicapped to themselves. They seem to feel shame that they cannot do the things they once did. I think part of it is the fear most of us feel about being unable to care for ourselves or being dependent on others. I know that’s probably my biggest fear with having this disease.

        I also refuse to use the term “disabled” – mostly because I work in computers and in that area, disabled means “does not function” and I feel that doesn’t apply to me. I do function, just not as well as normal, so I prefer the term handicapped. Just my personal preference, mind you. My doctor chuckled when I told him that and said he had never thought of it that way before.

        We have nothing to be ashamed about. It’s other people’s problem, not ours, that they can’t feel compassion for anyone besides themselves. I also don’t think it’s selfish to use facilities that help me, even on a good day. I’d rather save my “mileage” and energy for use in other useful or enjoyable tasks than in doing things like shopping or errands.

        There is always going to be someone else who is worse off than we are, but it’s not something one can easily judge, nor should we even try. But other people’s conditions don’t mean that mine is somehow less worthy. The only comparison I’ll make is to myself. By getting into these sort of “my disability is worse than yours” contests, we do the same kind of judging that we don’t want others doing to us. It’s not productive and all it does is breed more resentment and anger. Negative emotions like that don’t help anyone.

        I don’t know about others, but I’ve found that negative emotions like that will increase stress and that, in turn, can aggravate my RD. That’s why I try to smile and ignore the annoyances as much as possible. It can be hard when people are being especially obnoxious, but I refuse to allow others to make me feel bad or make my disease worse than it already is. They can only hurt us if we let them, so don’t let them!

        Of course, I didn’t do this at the beginning. It was rough at age 16 finding myself unable to do things. The teenage years are tough enough without throwing something like that into the mix. It took some time before I was able to accept that this was not going to go away and that I had to work with what I had. Perhaps being younger was beneficial, since I didn’t have as many years of habit or lifestyle to change. I know my innate stubbornness (which always drove my parent crazy) was a big help in dealing with RD. I’ve always been an independent sort, so I didn’t like suddenly being limited and then having people judge me. I’ve now had 31 years of dealing with it so people’s attitudes don’t bother me too much any more, but I can understand how those new to it can feel things so much differently.

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  • October 24, 2013 at 5:10 am
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    I’ve finally gotten to the point where I don’t tell people I have Rheumatoid Disease. If I go out, I go out during the hours between 12AM and 4AM if possible. If I MUST go out during the day, my caretaker goes with me. I wear a prominently displayed medical bracelet, as well as gloves and braces. They help with the pain, at the least. I’ve gotten to the point where I avoid people at all costs, because nobody understands what a 28 year old is doing ‘acting’ like she’s sick. It’s disheartening. :-/ I’m sorry you were hit. That display was appalling. Instead of allowing her to board, they should’ve called security. I’m just sorry that it came to you having to be in pain over someone who should’ve been forced to the back of the line, and told to wait.

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  • October 24, 2013 at 12:43 pm
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    How can we expect members of the general public to not judge us when our own rheumatologists often question the degree of disability we feel / are experiencing?

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  • October 24, 2013 at 9:24 pm
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    I do of course think that woman’s behaviour was apalling, but many people’s behaviour is apalling (when I was younger I asked an old guy if he wanted assistance in hailing the bus – he seemed to be having difficulty at a busy stop – I presumed he was having trouble seeing the numbers of the buses – obviously I was wrong because he simply hurled abuse at me). Our own ‘invisible illness’ isn’t the only one, and I would have to agree that mental illness is indeed a big one.

    Can I just say though (in response to the vibe of some other comments)that sometimes when people are looking, I think they are doing just that, looking, and not necessarily judging you. If everyone with RA stays inside and never goes out, how is anyone ever going to learn about the disease? If someone runs into you in the supermarket and tells you you’re too slow, why can’t you say ‘I’m sorry, but I’m disabled/have RA, and would appreciate it if you watched where you’re going’. My personal experience is that I was completely fine until a year ago, when I began having trouble with my knee. I limped around for a bit, it got worse, and was told it appeared to be an inflammatory arthritis. Long story short, it’s now also in my other knee, my left foot, my right hand (most fingers), my left wrist and thumb, and my right elbow and shoulder. They don’t think it’s rheumatoid (seronegative if it is) and I’m hoping it’s enteropathic arthritis, or one of the spondyloarthropathies. I very much hope that it will leave as quickly as it arrived, but that hope is fading. Medication helps a bit, but not much, and now I’m waiting to move onto the biologics. I limp, or shuffle, or walk ‘oddly’, depending on what kind of a day I’m having. I feel like I’ve been attacked with a baseball bat most of the time. After I’ve been to work (2 days) I tend to spend 2 days in bed recovering. I was a little concerned when I got a disabled sticker for the car how people would ‘read’ the situation, but I’ve found I either get no attention at all, or offers of assistance, or questions regarding what’s wrong, borne out of curiosity or sympathy rather than agression. What’s the expression? ‘Haters ‘gonna hate…’ I pretty much find that to be true… some people are just assholes. Most people however, are just decent people, who want to help, or understand, or simply keep out of your way.

    On a completely sep note – I can’t use a walking stick for a similar reason (hands) but can (and do often) use a crutch, one that hooks onto your arm so I can use my hands without dropping the stick, and doesn’t need hardly any grip strength. Even on days when I can walk without it, I find it steadies me, and it is a useful ‘visible’ sign of disability.

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  • October 25, 2013 at 7:25 am
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    That is just outrageous!!!
    I had this one incident where I was meeting a few of my father-in-law’s old high school buddies at a BBQ. As I was going around the room shaking hands, this one man in particular squeezed my hand like he was squeezing a lemon to get the juice. He squeezed so hard that my hand turned white and my middle finger and pinky had imprints of my wedding ring that I was wearing on my ring finger. My knees buckled, and he kind of smirked and said something about a manly handshake… I don’t remember exactly, because I couldn’t see or hear much from the pain. What I wanted to do was fall to the ground and scream bloody murder, but not wanting to cause a scene at my parents-in-law’s BBQ party, I used all my energy to give a little smile and excuse myself to go get something out of the car. I cried so much in the car, I couldn’t move my fingers, and my husband rushed out to see what had happened (he wasn’t with me when I was going around to say hello). I don’t know what would have been the right thing to do there, I think I handled it the best way I could.
    But honestly, when things like this happen, where “little things” like a extremely firm handshake and a minor assault with a cane… where most relatively healthy person would bounce back in a few seconds… I get so upset about how unfair everything is. I’m scared to shake people’s hands now, but what can I do? Before I even introduce myself, must I warn them of my RA? Should I just pinch their hand with tip of my fingers to avoid any firm handshake? But that could come off standoffish. I’m curious as to how other people with RA handle handshaking with new people.

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  • October 25, 2013 at 5:24 pm
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    Kelly, just know there are about a million people out there who love you to pieces, and who hurt for you sometimes. Thank you for all you do.

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  • October 25, 2013 at 11:21 pm
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    hi kelly and all other RD warriors,

    1. the handshake: i tend to wear my wrist wraps if i suspect a meet and greet situation. that seems to help protect me from hearty handshakes(most of the time.)

    2. the grocery store , parking lot etc.. i try to park a bit away from the entrance,where the lot is sort of empty. (living in the chicago area finding empty areas of the parking lot is not the same in rural or younger communities.) I have difficulty backing out and maneuvering the tight turn after a shopping excursion. pushing a cart back to the car with wrists resting on top of the handles (not gripping) the cart helps.

    3. glares and rude comments about handicap parking. i still don’t have a placard and haven’t felt a need yet. however, i stopped having “tender’ thoughts about what appeared to be the undeserving handicap parker before i knew i had RD. My ex mother -in -law would stay with us and she had definite physical limitations. of course her placard was in the car left in their home-state. I would pull up to a disabled spot. get her unloaded , situated in a good waiting area and run back t move my car to a better spot for the able=bodied. once in a while a nosey person had a comment. i enjoyed their shamed looks if they saw me with my mother-in -law latter.

    4. avoiding going out during “normal” hours. i also find myself avoiding crowds, peak hours etc… It is not my job to train the ignorant. I try my best to get things like a visit to a museum, shopping,… done midweek and earlish. smaller crowds, less fatigue, easier maneuvering, better chance of a bench to rest on, finish sooner; very much like when raising the kids.

    5. to the vicious woman with the cane. I will never forget the afternoon when an elderly aunt kept trying to hit her inexperienced caretaker. i had been clled to straighten the mess. i snatched the cane grabbed my aunts arm and calmly started to guide her toward my car, i handed the cane to the caretaker behind me. just as i had almost soothed aunt the poorly trained girl handed the cane back to aunt. the wildness started again. I’m not sure what is about canes and older women. but LOOK out.

    Kelly i’m very sorry for your injury. the whole thing on top of the usual discomfort, fatigue, would have sent me over the edge,
    Does this mean shin guards are going to be DE-riguer for those of us with invisible health issues?

    PArt of a verse in hymn.
    “O Love that will not let me go;
    I rest my weary soul in Thee,
    I will not sink at life’s alarms
    but ever gaze on Thee.”

    NVk

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  • October 27, 2013 at 10:19 pm
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    I owe everyone an apology. You see, I am that person who felt that the handicapped spot was abused, especially when they hop out of their car as if there’s nothing wrong with themselves.

    I am deeply ashamed of myself for passing judgment on people who parked in the handicapped parking spot. I have had to get a handicapped parking spot and felt like I needed it. Until my pain went away. Well, not completely away but bearable enough that I can ignore it.

    I started thinking to myself all the what ifs? What if there is truly a disability? Then I started thinking…what business is it of mine anyway?!

    So, I’m truly sorry from the bottom of my heart for being the person that glared at you or making snide comments.

    Right now, I’m feeling like a mental basket case. I have a doctor that I thought was going to be helpful and concerned and instead he tells me to stretch myself and lose weight. I know that I need to lose weight.
    He doesn’t take x-rays. He just orders blood work and I’m to go back in 6 weeks. He just typed in his laptop.

    So, I’m close to resigning myself that there’s nothing wrong with me. It doesn’t show except that I need to lose weight. Guess I’ll start there.

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  • November 2, 2013 at 1:53 am
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    I have to post because I recently had a similar experience but in my case it was not with a cane but a car. An elderly woman with no patience was in her car behind my father and I in a Costco parking lot. My father dropped me near the front of the store so I wouldn’t have so far to walk. This woman was honking and honking. I motioned to her that I would be just a moment longer but she just kept honking. I can’t move very quickly and I had just come from a doctor appointment where my shoulder had been injected with cortisone. No sooner did I get out of the car and turn to walk around a large truck blocking the path when she stomped on the gas and hit me in the arm with her passenger side mirror. Of course she hit the arm that had just been treated. I was so stunned and in pain that I couldn’t move right away. I yelled at her as she sped away that she hit me. I wanted to hit her car with my cane so badly but I did not, I’m not that kind of person. My father chased after her because he was angry at all the honking, not even realizing that she had hit me. Once I gathered my composure I called him and apparently she sped right out of the parking lot so she knew what she had done. It’s 3 weeks later and I am slowly getting better. I am right there with you Kelly some people are just downright cruel.

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  • October 31, 2014 at 11:23 pm
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    I have grown weary of trying to explain my illness to bosses, co-workers, friends and family. The battle to be understood is constant. I wish someone would change the name of the disease because people think “rheumatism” and “arthritis” as common ailments that affect a lot of people. I try telling people I have an autoimmune disease. That still doesn’t help. Then I try to explain the kinds of conditions caused by Rheumatoid Disease. I usually get a blank look. My employer tries to question my FMLA documentation. I had hand surgery recently and my manager said it had nothing to do with Rheumatoid Arthritis so my absence was not covered by my FMLA. Nobody really understands that because I take immune suppression drugs that a bad viral infection can land me in the hospital. I am very fortunate because most days I can move around pretty well and when I am in a lot of pain I try to “suck it up”. Because I try to be positive and hide my symptoms people often ask me if I have been cured and say, “You don’t look sick.” I think the biggest battle with the disease is that no one understands it. And yes, some people are really cruel. I have considered writing a pamphlet about RA to help people understand what it is like to live with it everyday.

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  • February 10, 2017 at 1:09 pm
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    Went for blood work today could not walk fast into the room – and could see frustrated look on lab techs face!
    So Instead of clamming up as I would normally do I launched into a detailed description of RA and how it affects me!!!! ???

    Reply

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