Hi all:
Contrary to most opinions it is hard for me to talk about my Sjogrens to people. I am often in situations where I have to bring it up like explaining why my contacts are so big and why I left my old job. I have to explain why I can't really watch tv or drive a car. It hurts to explain my losses. I usually get the rhetorical why don't u blink more. I try to explain that it isn't as easy as that. I try to remain positive mostly since I speak to several young people like myself who are struggling with dry eye. To them I am positive but to this board I show the real me, scared and sad. Will it ever get easier explaining to people about SJogrens?
Kim
Hi Kim :)
I don't know if it ever will get easier. Maybe if there was more publicity about it - but I just don't know. People just aren't sure about things they're not familiar with. If we talked about 'MS' we'd get a totally different reaction.
My colleagues and friends definitely just don't 'get it'. I'm older of course, so they equate aches and pains as "well - none of us are getting any younger!" They equate sudden sweats with menopause and they have simply no idea what dry eyes and a dry mouth feel like. One is making an extra effort to give me 'wet' food at lunchtime which is nice of her. I went on a refusing to eat potatoes bit for awhile because they were just too dry. In all honesty - I could do with losing weight - so I don't need potatoes at lunchtime anyway.
In my case I also look a lot better than I did a couple of ears ago. Before I had a knee replacement I had a pronounced limp and a pained expression etched into my face apparently. Now I don't limp and the pained expression has smoothed out so everyone reckons I'm a lot better than I was. I suppose in a way I am.
I just know I really value this site because we all know it's no picnic.
Take care - Scottie :)
I guess it just hurts to go over what I can no longer do. I guess it is always going to hurt being so different than other people. Sigh. I just feel that I have already coped with so much already in my life. I was tortured in school and suffered a benign tumor in my breast when I was 16 which resulted in a nasty scar. Now this dryness is so overwhelming. I guess life isn't fair but it seems like my life is unfairer than most.
HAve you thought of going to see a counsellor. It sounds as though you are doing a whole lot of grieving at the moment and you may need some professional help. I went back to my counsellor last week after foour years. At first i didnt want to and saw it as a step backwards and a failing but you know i am so glad i did. Being able to talk to my counsellor about the unfairness and the pain and my worries for the future helped me sort out a lot of things in my head and has started me on the road to acceptance.
Im not saying it will ever be easy. it wont and thats our reality. but we all need a little extra help sometimes. And an outside view can sometimes give us some insight and coping mechanisms.
Pud
It does hurt to talk about it, doesn't it?
To me, it seems most people don't get how hard we work (how much energy we use up) just to seem normal. They tend to say "You look good, so you must be feeling better." What I really want them to say is, "Wow, I can see how hard you are working to look good, when I know you feel awful!" In other words, I want them to understand me without having to explain myself. The only folks I know who can do that are here on this site, because we have the same understanding through sharing this illness.
It is a lot to have to deal with all this when you are young - I know how cruel kids can be in school. I'm so sorry you had to grow up with that in your life. It adds an extra layer to the misery of being ill.
The one thing I have to keep reminding myself is that almost everyone has something in their lives that makes them feel different or unfortunate as well; I just may not know what it is, and even if I knew, I might not understand just how awful they feel about it. Usually that insight doesn't kick in until I have felt sorry for myself for a while, though.
Anyway, you know you can come here and feel what you feel without anyone judging you. And as Pud says, don't be shy about getting counseling help if you need it.
Take care,
Genko
If you feel that you have to tell people why it is hard to watch TV or you can't drive, just tell them you have an auto immune disorder, never use the word Sjogren's and about dryness, blah, blah, yada, yada. That just talk for your fellow Soggies.
You tell them you have an auto immune disorder, now some folks think an auto immune disorder is AIDS. The look on their faces, priceless.
If the explanation needs to go farther, I simple explane that my body has turned on its self, it is destroying healthy tissue and there is no cure. That pretty much stops any further question or stupid comments. And if you really want to have fun, tell them it is highly contagious and kills you in 6 months.
Good one Epson!!! In all honesty I have taken to telling people I have an autoimmune disorder and that my body is trying to kill me off causing lots of health issues. That makes such an impression and I get more respect than if I tell them that I have sjogrens.
I know that life is not fair, but I also know that life can be good. I go through episodes of feeling sorry for myself and having a good cry and then I try to pick myself up again. I don't have a social life but much of the time I don't have the energy anyway. I don't have the energy to sit and talk a lot of the time. It is kind of funny, but when I started getting worse one of the first things I noticed was that I didn't want to talk anymore cause I was too tired. Me---who talked all the time.
THe one thing I can tell you is that I have discovered talk radio shows and they really help. They keep me updated on so much that is going on in the world and help me feel like my brain is getting a workout. There isn't much on TV anyway.
Kim, I think Pud gave you some good advice. You sound very sad and it helps to talk to a counselor. So often just opening up and saying all the things that are bothering you. Also, counselors have suggestions and even support groups that can help. It is true that people are more attracted to those who smile and laugh and it really does feel good to get out and do that. Just a few hours can make such a difference in ones life.Good luck and let us know how you are doing. IRish ;D
Hi Kim, I just say it's related to Lupus (most people know something about Lupus)! Actually Sjogrens is sometimes described as being a 'cousin' to Lupus so it's not far from the truth. I also have Chronic Fatigue Syndrome and most people think that's just tiredness (yeah right) :(
Good Luck with it,
Lesley (NZ)
I just tell people that my immune system is randommly attacking my body organ by organ. I then list what it has done. Usually they ask "what can be done about it" I say "nothing i just get on with it" That usually stops people and i dot get anygrief after that.
Its still not easy though. My work colleagues dont understand how i can be fine at work one day then have to call in sick the next because i am too tired and in pain to get up. That's their problem. I do worr but am leraning not to. there is nothing i can do about it and worrying only makes me feel worse.
I tell people i may look well but that rosey glow in my face is only the surface of the havoc that is going on inside my body. Its road kill in there and getting worse.
Hang in there Kim. It will get better. Use the support on offer here. It works
Pud
Yeah, I tell people, "I have a funky disease that wants to blind me and rot my guts"
It seems "a graphic approach" is better for me right now because I'm in the angry phase of acceptance.
No one gets it but you guys.
Good morning Kim,
Boy, does this hit the nail on the head this morning. All week I have been trying to get to Curves in the morning. It is helping me so much with my legs. However, it's also causing me to wake up the next day with pain.
My friend just called and wanted to know if I was going this morning. So far this week I have made it by 3:30 P.M. but not in the morning yet, which is when we usually go.
I am very fortunate with Carolyn because she understands what I go through and she is willing to wait for me. But, I also understand her too, she is bi-polar and sometimes she just isn't up to something we are suppose to do. So I guess the old saying "takes one to know one" is true.
Pud is right, the counseling will help greatly. There is just something about being able to let it all out and having someone tell you face to face that you aren't crazy and that things will be okay again.
Take care dear and keep letting it out with us. Who better to understand than this "family" of friends.
Hugs, Pooh
QuoteAnd if you really want to have fun, tell them it is highly contagious and kills you in 6 months.
QuoteYeah, I tell people, "I have a funky disease that wants to blind me and rot my guts"
Then jump up and run towards them with arms outstretched saying "I need a hug!" and have fun watching them scramble out of your way. hehe
Sue
Sue,
I just feel out of my chair laughing! Hubby had to pick me up!
JannaLee,
I'm glad you liked that. Nobody in my family thinks I'm as funny as I do.
Hugs,
Sue
Sometimes I mention "Sjogrens Syndrome" and I usually get a head shake meaning "no they haven't heard of it." I was explaining to two friends last night that I've fought my ins company for 4 months trying to get Lyrica. They wanted to know what it was for. Finally, I said it's the one you see on tv advertised for Fibromyalgia. I usually get a nod of recognition if I mention it's like Fibromyalgia, or RA, or Lupus. Often, I'll say "it's a cross between Fibro and RA"........thats as much sense as I can make without further explanation. I don't want to give further explanation and they don't care to hear it.
I really don't think people want to hear about it. This is also understandable because so many people have problems with their own health, often worse than SS. My friend was going on last night about her "pancreatic" problems after an intestinal bypass operation where she lost 100 lbs. Lucy
I also tell people it like lupus or MS and that my immune system is attacking my own body.....thats what they relate to better and understand more.....but I do tell them the name so that they actually hear the word Sjogrens! I figure the more we say it and get the word out.....the more people will say....hmmmmmm, I heard about that the next time someone mentions it!
It's all about education!
You are so right Lynnie! That is a real good idea.
I'll start adding the name to my graphic description!