Since this latest flare, I've been reading a lot on Sjs and have come across many times where people complain that family, friends, acquaintances etc. can't see that they are ill - they get angry when someone says "Funny, you don't look sick?". :'(
I feel different, I don't want to look sick, I don't want to share my personal health problems with everyone that I meet. I'm thrilled I'm not orange-yellow from Jaundice, have blue lips from circulation problems, not in a wheelchair with painfully thin legs from paralysis or have some other health problem that you can't hide from total strangers. I'd rather tell someone I feel fine when I'm really in pain. I have successfully hid problems at work for the most part. I prefer to share my illness with DH and my children when it impacts activities etc. I don't want to burden them with my health issues when I can deal with them myself. OTOH, when I have problems I do ask for help and DH takes it serious when I do complain. They know when I'm lying down or sleeping it's from fatigue and I'm not being lazy. If I tell DH I'm too tired to make dinner, he steps up to the plate and my children are happy to go to the mall with me knowing that I may walk from one bench to the next if my joints are complaining. Because I have good support and understanding from my family, and a place here to grip that I don't feel the need to look elsewhere. I find that most (not all) people aren't interested in your problems, they have their own. If you look for support from people who can't give you what you need, you will just be disappointed.
How do you feel about this?
Skylar
Hi Skylar,
Oh girl, you've got the tiger by the tail with this one...I so agree with you though. I can't tell you how many people have told me I don't look sick, until I pull out all the med bottles/drops and just watch the eyes bulge. My family is the worst, they keep expecting me to do all the things I did before, and when I can't, I get the guilt tripping (nope, that doesn't work on me anymore).
I have taken all my meds to a family members house just to prove that I'm not faking it - shoot, I take more pills than all my sibs combined - they still think I should be good to go as before. It's funny as I had a family member tell me that if I didn't see so many doctors then I wouldn't have to take so many pills then - ah, head meet brick wall! ::) I had to ask what planet was he from (and it's funny as he was actually serious)?
Oh well, I can only hope that maybe one day when they get really ill, they'll understand. In my case though, my head plans on meeting that brick wall a lot more.
Take care -
Patze
Skylar, I do admire your attitude, but unfortunately like Patze said, it doesn't work for all of us. When you have been the "go to" in family, and the one that is always there when something needs to get done, they don't want to hear you can't do it.
I am thankful that my immediate family realizes I can't do anymore and they can't do enough to help me, but I feel so bad everyday when I hear about families that just "don't get it".
I hope you continue to get the understanding and support you are, and I pray others will also.
Hugs, Pooh
Very good points all round. I must admit to being pleased that I don't look like I feel (that would probably scare small children!).
In my case, its a matter of context. If someone says "Looking good" as a simple statement, I'm flattered, but if it's part of "but you look good...why are you laying around/running to the doctor/popping so many pills/saying no when I ask something/etc, etc,etc" it gets annoying and I feel the need to explain that some diseases are invisible.
Luckily I have a fairly small circle of friends and family, and they are almost all very understanding, so it doesn't come up often.
I like your outlook Sykler. I am one that all can see part of my problems. I walk with a cane and am in a wheelchair if it involves more than a couple of minutes walking. I find it doesn't matter to strangers. If they are the kind to ask questions they will, if they are the ones that stare, they will do that. I really don't mind telling people what is wrong if they ask. Most times it is kids that ask and the parents just stand there. I really enjoy telling the kids that I can't walk because my bones are not strong anymore. The more we can educate people the better.
Hi Skylar,
I am so glad that you are getting the support from your husband and family! That is fantastic. I consider myself really fortunate to have really loving and supportive family and friends too.
It is extremely important to everyone to feel that when they express pain/fatigue/stress/you name it, those feelings are accepted as valid and worth a response.
I think when others post that they are frustrated by others not recognizing their complaints, what they are really saying is that that they need to have their feelings acknowledged, that the people around them need to understand how difficult this illness is for them, and that they need love and support.
Everyone handles this DD in their own way. I don't think there's a right or wrong way - just whatever works for each of us. It's so great to have a place like this to find out how others are managing to keep moving on even with Sjogren's.
Hi Skylar - I agree with you all the way! I don't look sick, I don't share that I'm sick but I am not sick as many here so it is not obvious. But I do have my sick periods and I just want to drop out of everything, but either I can't or I don't and I don't want anyone to know. There are a couple (maybe 3) in my family (and 2 of these live out of town) who will pick up on the slightest change in my voice or whatever and ask questions. One of my daughters and one of my sisters (both who live out of town) are always the first to pick up on anything without me telling them anything. The other is my husband who doesn't really pick up on it but I do tell and he never expects anything that I don't want or feel like doing so it's not a big deal to him anyway. But my youngest daughter and oldest sister will keep asking if I'm ok, have I been to the dr? What can be done, etc. The rest who don't pick up are just as well not knowing, and like you, that is just the way I am. It could all change one day but for today I'll keep things the way they are.
I know that I have a strange sense of humor so I usually do not express its first reaction.
To "Funny, you don't look sick?" a recent comeback that I had was "You don't look well. What's wrong?"
I used this for a few years until I tired of listening to others laundry lists of ailments.
You are funny Joe - I guess I can appreciate your sense of humor b/c it's just like my husband's. Thanks for sharing the humor side.
skylar, Sounds as though you have things figured out and they work for you. You are lucky to have the family that is supportive and listens to what you say. There is nothing wrong with mentioning your health issues but it sure doesn't get us much attention because we mostly always "look so good".
I find that I just avoid the people that will give me a hard time---it is easier that way. I don't really miss any of those people anyway. :P Just keep on with what you are doing and if things need to change you will be the first to know. I like you attitude!!!!! Irish ;D
Yes, I am lucky that DH is so supportive and helpful - but it took awhile for him to learn to be that way. One of the things that helped was he came with me when I was examined by the neurologist and they found all these problems that you can't fake like Babinski's sign in my feet and Hoffmann's sign in my hands indicating damage to the central nervous system.
Patze - I guess the crux of getting support from the family is finding whatever it takes to make them understand - whether it be all the medications or Dr's. letter or notes or someone important in the family accompanying you to the drs. It can be frustrating and painful when our own family doesn't understand. But I don't look for support from people I know I can't get it from - as you point out, you will keep hitting a brick wall - and that hurt.
Pooh, I used to be the go to person in our family and in many ways I still am, but I learned to share the responsibility or to work around problems. I completely understand what you're saying though, because I see posts from others who are suffering terribly because they lack that understanding support. Like you, I hope others can find the support they need within their family to lessen their load. We all need support at one time or another, even if we are perfectly healthy - it's just a good relationship of give and take that we all have to work towards.
Linda, I'm lucky that I haven't faced that from people who I care about making demands that I'm lazy or don't look sick enough to do something. Years ago I did learn how to say no from a book - when you say no, you don't need to offer any explanations so maybe I don't hear those comments because I don't allow the conversation to go there. When I do say no - I also usually offer another alternative so it doesn't seem like a nasty unfriendly no.
Yickelly - I love your attitude about being in the wheelchair and using it to teach others. You're right about educating others.
Annj, yes you are right and it is so helpful to have this place to learn what others face and how they deal with it.
Rita, yes, that's how I feel - you have your close support and then you don't have to depend on others who can't or won't or just aren't able and can actually be hurtful in their responses.
LOL Joe.
Thanks Irish
Cflickinger - I am sorry you are in such a position - it's unbelievable that you have to read for someone else making a significantly higher salary, something isn't right there. Have you spoken to HR - although often HR really isn't helpful. Sometimes the best thing is to look for a new job or switch to another department if you have that option.
Thanks for all your responses, I enjoyed reading them.
Congratulations, cflickinger!! That is wonderful! Don't forget to let us know how things are going when you get there. Sorry your son is in Afghanistan, prayer being said for his safe return.
Hi Cflickinger,
Let me also wish you my congratulations!!! That is outstanding!
And I join Kelly in hoping a safe return for your son.
Take care -
Patze
Congratulations, cflickinger, I'm glad to hear your good news - nothing like leaving a miserable work place for something exciting like going back to school. I hope your son returns from Afghanistan soon.
Skylar
Hi Everyone
This is an interesting thread on everyone thoughts and experiences.
Ever since the newspaper did the article about me and sjogrens, there have been alot of people that I know come up to me and tell me that they read the article and learned alot about sjogrens from not even knowing there is a sjogrens. They are surprised what sjogrens can do to a person and then they say..... here is comes......But you don't look sick", almost everyone who said that to me apologized immediately for saying it, I tell them that is what alot of people say. It surprised alot of people because they didn't know i had all of this going on with me, because I try to act "normal".
My Mom and ex-husband are understanding of what is going on with me. It took many rough, hurtful, hateful years to get to where we are today.
I also thank God for this forum.
cflickkinger: congratulations on your new adventure! It sounds fun and exciting! My brother lives north of Denver in a tiny little town called Masonville, close to Loveland. I like it there and if I could I'd move there ASAP!
Your son will also be in my prayers for a safe return home. I belong to a group(MOM) who puts together care packages for the troops, I try to get people to write letters or cards to include in the box letting the soldiers know we support them. If you want, email me you son's address in Afganistan and we would love to send him a care package and anyone else's address so they can get a box from us!
Take Care
Debora
Carol,
Congratulations on your scholarship! What will you be studying?
Schnauzers?? Schnauzers?? I have two of the little stinkers. I love 'em! Mine are named Bart and Maggie. They are minis.
Julia
Oh I just love that,, (but you dont look sick),, thats when I want to crack them with a ball bat and tell them,, but you do,, ok,, i;m being cynical,, but lke I have said a million times, if your not growing a third eye,, what they cant see they dont u nderstand
I see both sides of this argument here. Definitely interesting points everyone is bringing up.
I, too, don't want to look sick or be viewed as the "invalid", but I did get very annoyed recently at an outdoor wedding when these old people INSISTED they sit in the spot we were going to sit because it was more shady. As a result, I got sun sick and threw up. You're supposed to default to old people and people in wheelchairs, etc., but sometimes I hurt too and it is frustrating when people can't see that or think I'm rude for taking up a seat on the subway because I feel that I cannot stand the entire ride.