Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Would you say anything to mean people?

Hi Gerri,

I'm sorry to hear what has become your sister's relationship with you. I know how bothers and sisters can be sometimes.

Before I got married, my brother had a problem with me. He kept saying, if Social Security is paying your rent, why should I have to help pay if I'm living with you? All he ever paid was what he thought was enough for one room. A while back he used to used to say repeatedly "Oops I forgot you can do that anymore", and I think he said it on purpose to make me feel bad, like I did something wrong to him over the years. All I asked was to go halfsies, and to be brothers... Right now we barely communicate.

Thanks for the reply.
Take care.
James.

Hi Megan,
I'm sorry you have to go through comments like these too. I think I am going to start speaking up like you and Jeanna are about to do. Like you I felt I am have always tried to do everything in my power, well except for one thing, the smoking problem. I did eat my own home cooked meals for the longest time, took all my pills, did all my exercises, enjoyed going to therapy etc, but still someone will say "you must have been slacking off all year because nobody has ever come into my office this bad". I don't get days off from my daily regimens.

Thanks for sharing Megan.
It helps to see how other people are going to take action.
Take Care,
James.

Haha Kat,
I like reading you have to say. lol.
Other than the types of people you mentioned, I feel there are people have also used these words to make themselves look better than me, or have some sort of power over me.
Like if I feel ashamed of myself enough, they can have their way with me, and use me (it's happened). There's all sorts of people doing all kinds of things, so sometimes I feel like I belong on another planet with people of my kind.

I like what you said about
"I would be tempted to look them in the eye and ask them how big their feet are (or how tall they are, or what their hat size is). When they respond, no matter what they say, ask them, "How could you let your self/feet/head get so big?" "

LOL, This might work too....

Take care,
James.

Hey James,
Darned good question! I guess I don't know if there is a "pat" answer for these people. I think it depends alot on the person asking the question and how it was meant.

While most of my symptoms do not effect my outward appearance, other than a grimace or just looking totally worn out from fighting it, I still get questions or statements posed to me that do strike a nerve.

I try to just let them roll off and keep going. I have tried explaining what AS is and how it effects me. This is usually met with the glazed over stare of a deer in the headlights and alot of head bobbing. How do you explain AS in a short sentece that a person without a medical background can understand? Anymore I guess it just depends on the person and what was said.

The ones that strike the biggest nerve with me right now are the ones that see me doing something, and then question how I can do that but can't go to work for 6 months... That really felt good coming from my dad. Yeah he is my dad, but he also is one of those people that engages their mouth before their brain kicks in. In this instance he didn't see that the little job I was doing that would normally take me a few hours had turned into a 4 day marathon. 4 days of doing a little piece here and then taking another trip to Vicodan-land. Waking up and doing another little dab there and float off to the world of Oxy. No that part never even entered his head.

In this case I was on my last nerve anyway, so I just looked him straight in the eye and told him just how much I appreciated his support, and that I really needed that kind of help at that moment. I told him that the last time I checked I couldn't work my regular job while I was on these meds. And a busy fire appartus shop is not the place to fly off on pain meds. And besides we don't get nap time at the shop.. Let alone the dreaded random drug testing.. Yeah I can see that dipstick turning all the colors of the rainbow.

Keep Kickin'AS
Chris

next time just kick the person in the shin and tell that person that you cant see anything wrong with him so why are you hopping around......oak other wise id use kats idea but ive never been good with words and always quick with an action....oak

You know I am a quiet person, this trait stinks because I don't like to tell people my business and that I have limitations because of A.S.. So people think oh she looks normal so why is she asking me to lift this for her,(like at the pet store I can't lift the dog food bags into my car)
just one example. I think some people, not everyone of course, that doesn't have a chronic condition just can't really put themselves in your shoes. However pain stinks and for people who just think your making it up because you
look normal, to bad for them. Hey isn't it strange how your pain can reveal peoples true colors, good or bad. I can't tell ya but its made me stronger and more deep but I would not wish it on anyone...Peace

Hi James,

Like everyone else, I tried to explain my condition to people who asked...but that was a useless task. They just don't understand. Now I just say that I have arthritis,and it's only if they push more for ino, then I kinda give them a brief overview about my immune system going into overdrive and attacking my own body. I now have built up a tough enough skin that I really don't care what people think about me. I did at first at work before I went on disability, and I let them hurt me. But now...to heck with them. They don't live in my body, they don't know how little I sleep, they don't know how crappy and poopy and tired and exhausted I feel all the time, so pooh on them. Until they can step into my shoes, they have no idea about my pain levels. So, my quick answer is "I have arthritis"...simple as that.

Hope that helps. Hope you are doing well and not flooded out yet! Yikes! Have you gotten back into your exercise routine? Arm all healed up yet??

Trina

How 'bout, "I'd reply to your comment but I've found that people like you don't really want answers as much as they like spreading their ignorance. If I'm wrong, why don't you google Ankylosing Spondylitis and see for yourself? Perhaps then your ignorance will turn to understanding. If and when that happens, I'll be glad to talk about it with you."

I guess we all have to live with this as part of our life with AS and other "unseen disabilities". My biggest problem has been with my sisters. I have one sister who says, "Why everyone hurt. I am just two years younger than you are and I hurt every day." and I told her yes and she works every day and flies all over the country with her job and teaches Bible class, etc. and I do good to take a shower. She doesn't get it that there is pain and then there is PAIN. She doesn't choose to see my deformed joints and my limping, etc. She tells me that I need to focus on something besides myself, that I need a hobby, something to do keep me busy so I won't think about myself and think myself sick. We had quite an argument and I decided then as far as anyone in my family is concerned they will never again know how I am. I told her she didn't have to worry about my "what she called complaining" because she would never again know what is going on with me, not even if I am in the hospital. And she said, "W-e-l-l I would want to know if you were in the hospital." That won't happen. I have given orders to my hubby and kids that my sisters won't know what's going on and won't be called. My brothers are a little more caring. They just don't bother to call very often and it's kind of like when they hear my voice they remember. Yes, I do call them and I ask how everyone is doing but if they ask, I just say, "We're OK" and we are.

"WE" are doing fine. We just can't get around very well and depend on each other totally which is the way it should be.

I do have friends who care so much that they call, drive 100 miles to bring me a book, rub my feet, sit with me, bring us food, scrub sinks. They are angels to me and I know they will have many jewels in their crowns.

As my daughter reminds me "Friends are the family you get to choose." If someone is toxic to me with their unkindly hurtful choice of conversation, then they are "out of here, zip, gone, nada," LOL Don't need any more toxicity in my life. And I don't intend to be toxic to any one else.

Well, just my probably 1 1/2 cents worth but I just had to say my thoughts and I guess vent a little. Some of you know my sisters' wonderful attitudes. I found out they talk on the phone to each other about me also. One of them also has Lupus and RA but she teaches every day and just got back from a 10 day trip to Hawaii and the other one manages to tell me that our little sister has the same thing and look what all she does!. Oh here I go again.

I am so thankful for this forum and my family here. This is my chosen family.

I hope you all have a blessed day.

Possi