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Why can"t you work?? What would you say??

Posted , 5 users are following.

christine_73623
christine_73623

hi

I have been diagnoised with SS for more than 22 years now, I had to give up work for about 3 years now, How do you all feel when even members of your own family do not realize how bad SS can be.

They may not come out and say it , but you know they are hinting at  , "Oh well I  could work part time", or "Oh no I must be  getting used to staying  at home " or "She is using that illness for an excuse why she can"t work, or "All she does is sit at home, all day and her house still is not clean" I even had my own son say,  That he knew someone that had an autoimmune disorder and they still worked, but the person he was talking about was 27,  I think the last 3 to 4 years have been my worst, with SS I think i have done extremley well to work all these years I am now 53, how have you all responded to those statements, or hinting at them,  Do your good meaning friends or family have said things or hinted at things  to you??, If i had my leg in plaster everyday of the year then they would see, but because I look fine, I must be???

0 likes, 11 replies

11 Replies

  • kristyk
    kristyk christine_73623

    Posted

    Hi Christine, Wow do I understand what you have just explained. It hurts doesn't it? Especially when its your family. The last thing you wanted to happen to you was to get chronically ill. Its a huge loss when you get so sick that you can't work anymore. I have 2 sisters who actually say I haven't contributed to society. I worked for a long Tim before I needed to stop working and have been receiving disibility since 1990. THE MOST IMPORTANT THING YOU SHOULD SAY TO SOMEONE WHO HAS AN INVISIBLE DISEASE IS I BELIEVE YOU!!! They don't know how much you suffer everyday. Do people look at you and say You dont look sick. No one has the right to judge another persons illness. Are you receiving disibility? If so a federal judge of The United States deemed you disabled, unable to work due to the laws that help people who are ill. Of course if you live in the U. S. A counselor of mine once they were jealous. And definitely dont understand or want to understand your illness. My sisters never have asked me what I experience with having Sjogrens. Or even How r u today? Always staring and giving dirty looks. I decided two Christmases ago that they were toxic and were not helping my disease so stopped attending their holiday events. I have a separate day I spend with my Mom, and she understands why I had to to it. She doesn't understand what their problem is. It hurt at first but I actually felt better after a few cries. I love my sisters but they just aren't normal. There are alot of people who go through this. Its an added stress and pain you dont need on top of everything else you have to deal with. I am so sorry you have to go through this when all you need is their love and understanding. I hope things change for you and they come around soon for you. God bless you and their are people like me who do care.

    Kristy k

  • jordan58854
    jordan58854 christine_73623

    Posted

    I think it depends both on the particular person's physical and mental state. The worry about ss can cause depression, sleeplessness and exhaustion. The physical aspects can make one pretty annoyed on a daily basis. I often think it is the trouble-makers at work that make working difficult. My boss is an absolute witch. She goes out of her way to make everyone beneath her miserable. My distant cousin with ss say that when she stopped working she was free of so many of her symptoms. Again, difficult humans, stress and a lack of sleep or early rushing to work makes symptoms worse. The right kind of work might be a relief if it makes you happy. 
    • christine_73623
      christine_73623 jordan58854

      Posted

      I worked for many years Jordan and have a degree and loved my job , absolutely loved it but can not longer work as my SS has been very bad the last few years, i would still work if i could.
    • kristyk
      kristyk christine_73623

      Posted

      Hi Christine, When ur unable to work because of an illness like SS I think you kind of go through a grieving process. You've lost a close friend. It was a place where you spent many hours doing things you loved to do. Its a very difficult thing to go through. And when you have people talking about you and saying or hinting things is hard to not respond to. Dont give them the time of day and try not to show it bothers you. I know that's impossible to do. Have you heard of The Sjogrens Foundation. They have a monthly news letter called the moisture seekers. If you join to be a member its an annual fee of $32.00. They have all the current studies, fundraising, support groups, annual conferences all over with specialists that speak about each of our many oral, medical,etc problems. If you called and ask they would know the volume a story was written about exactly what you are experiencing. It was an awesome story. I will check through the ones I've saved I may have it. If I do I think you would find it helpful. I did.

      I'm sorry you got this lousy disease too..God bless you

      Kristy k

      I'm going to look for that story. You can check it out online too. Some of the really good columns I leave out for my family to read. There have been a few that helped them understand what we struggle with everyday.

    • jordan58854
      jordan58854 christine_73623

      Posted

      I am very sympathetic in regard to the symptoms and not working. I am only saying that what is worse, for me, is a job that gives you additional stress and makes your symptoms worse. I think work is very difficult for a person with ss. Bottom line is that there are very stressful jobs that are terrible for ss and there are other jobs that can take your mind off your symptoms. Even volunteering in something you love helps, if you have the strength. My job is a stressful one that makes me feel worse. I am trying to start a non-profit, which is my passion, so I do not have to work for someone who stresses me out and makes symptoms worse. Stress makes symptoms worse. 
    • debraUK
      debraUK jordan58854

      Posted

      Hi Jordan

      What a great question and I'd guess many of us find other's incorrect perception hugely frustrating. I waver from wanting to keep how I'm feeling to myself so not to bore or burden others and when feeling particularly bad to letting it all come out tears and all. People don't know if you don't tell them I suppose but when family friends etc make ignorant comments I make the point of asking them on what information their view is based and that if they don't know the whole picture they shouldn't judge. Regarding the question about work I explain it was tried for 10 years to adapt role and environment to help me keep working even part time but eventually my health meant my employer had to let me go. And this continues, if anything my symptoms have worsened - although you may not notice as pain and other symptoms are invisible.

    • debraUK
      debraUK

      Posted

      Oops can you tell I don't know this site app. Sorry meant to reply to Chrustines question 😃
  • debraUK
    debraUK christine_73623

    Posted

    Hi Christine

    What a great question and I'd guess many of us find other's incorrect perception hugely frustrating. I waver from wanting to keep how I'm feeling to myself so not to bore or burden others and when feeling particularly bad to letting it all come out tears and all. People don't know if you don't tell them I suppose but when family friends etc make ignorant comments I make the point of asking them on what information their view is based and that if they don't know the whole picture they shouldn't judge. Regarding the question about work I explain it was tried for 10 years to adapt role and environment to help me keep working even part time but eventually my health meant my employer had to let me go. And this continues, if anything my symptoms have worsened - although you may not notice as pain and other symptoms are invisible.

  • jennixxie
    jennixxie christine_73623

    Posted

    Well I don't work but I go to school. I'm a senior about to graduate and I have had SS for 3-4 years and it's absolutely hard to feel tired. In the beginning I would get super dizzy and there would be times I'd faint for a couple of minutes, my eyes are dry, dry to the point where they burn, another thing is everyday coming home or any day I would feel weak so damm weak if I bumped myself anywhere it would hurt.

    Lately like 2 weeks ago I started feeling tired like back in the beginning and I've notice the change in me cause now when I get to school I just want to sleep and my body aches.

    I also have stop telling my family, boyfriend and friends of how I feel because I honeslty feel like they get annoyed and I can see the way they their faces change when I say anything. I'm so sick and tired of all this!!!!!

    By the way my doctor told me that if this gets worse off have to start a new treatment which i forgot the name but it's mostly used for cancer patients which I read about and I really don't want to start this treatment EVER especially cause something that can happen where I get other diseases I don't want to deal with it anymore and I know it's not as bad as how some of you had it for so long but I can't no more

  • jordan58854
    jordan58854 christine_73623

    Posted

    Jennifer, you must focus on the things that make you happy. You must have excellent communication with yourself and the heck with everyone who does not care. Live your passions. This is your life to make magical. Take care and this group is here for you. 
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