Friday, October 15, 2010

Share Your Sjoggie Story

Awhile back, I received a letter from a fellow sjoggie that was struggling with a choice that all of us face during the course of our disease: To tell? Or not to tell others about my health issues. And if I'm going to tell - how much? And to whom? And when? And how?

I can't even pretend to know the answers to these questions. In response to her letter, I simply described my bumbling route to disclosure. But after I hit the send button, I sat back and wondered how each of our stories share similarities and differences.

How did you decide who and when and how much to tell others about your autoimmune disease? Did these revelations strengthen your relationships or cause them to fade away?

Did a frank discussion about Sjogren's syndrome with your employer lead to an increased sense of security in your job, or did it lead to your resignation?

I'd love to hear your stories. And I think many readers would appreciate reading them too, especially those that are early in their diagnosis and trying to find their own path.

C'mon. Share. We would all benefit from your stories.


Leslie at SugarAndSpiceADK. said...

Hi Julia! My friends and family all know about my autoimmune problems. My family has been amazing--I have a very supportive husband, child and parents. They are always there for me. My friends--that's a different story. I didn't want to tell them, but they were so curious as to why I was always running to doctor's appointments--we live an hour away from the closest city, so the trip usually takes the good part of a day. Most of my friends look at me strangely when the subject of my illness is brought up--probably because I DON'T LOOK SICK--I really make an effort to look my best, even when I'm feeling crappy. I am having an evaluation done at Johns Hopkins in December, though, so maybe then my girlfriends will take this whole thing more seriously? Anyways,best of luck to you, Julia--you are a strong voice for millions, to be sure!

Blogger Mama said...

I have made an effort to share my autoimmune story. My husband, daughter and parents are fantastic. My Mom also deals with several AI's. Some of my friends are very supportive and understanding. They offer help at every turn. Some of my friends prefer to act like there is nothing wrong with me as a way to cope. Most of the time I am ok with either reaction. Though I would be lieing if I didn't admit to feeling hurt by it at times.

I have realized that there are many people who don't even realize what autoimmune dieases are let alone what my specific one entails. Which is why I started my blog. As you know Julia, I was inspired by you and a few other fellow "chronic chics" who blog about their AI's. I wanted to show that AI's can be debilitating, but it is what we make of it that counts. I've tried to make it a platform to educate people while writing about my daily life at home while raising my daughter. Because the more people we show, the more "advocates" who know!

sue said...

Hi Julia,
I told my friends about it because they are, or were, all employed in healthcare and we were all trying to guess what the spots all over my legs were a few summers ago. We thought the burning eyes were probably allergies. It only took a few months to find out that is was vasculitis and that I had an autoimmune disease. They have been very understanding but other than the dry eyes, mouth and vasculitis that acts up mostly in the summer, it hasn't been much of a problem yet. I have a 14 year old with cerebral palsy and an intellectual disability and that has proved to be more of a challenge for me. I lost all sorts of friends when he was born. I do worry about looking after him as he gets bigger and the sjogrens progresses but my husband is great and my mom helps out the best she can. Fortunately fatigue is not a problem as long as I go to bed when the kids do and ibuprofen works for my aches and pains. The plaquenil is nasty and causes grief from time to time but I am doing okay. I left my nursing job back in 2001, long before the sjogrens showed up, to look after the kids so I don't have to worry about an employer. Things are pretty good and I pray that they will stay that way. My mom has a friend who has sjogrens and discoid lupus. She is 80 years old and has had these issues for 50 years (the lupus anyway). She makes the best of each day and she is such an inspiration to me. I want to be like her when I grow up.

Anonymous said...

My familly knows about it, and in their way they try to help, like when they read an article on Sjogren, or heard about a TV show and so on.
Some of my friends knows as well. They understand when I can't come becaus eI'm too tired, or because I have joint pain.

No one know at work, I haven't tell anyone, I'm too afraid of the consequence.

annie said...

Hi Julia,

As a fairly newly diagnosed (last year) sjogren's patient, I don't have to worry about disclosing my illness to anyone. I stopped working 10 years ago when I was diagnosed with chronic fatigue syndrome and fibromyalgia. I tried going back to work a few years ago, but was unable to because of extreme fatigue and various other complaints, so I have no contact with ex co-workers except for one, and she is aware of my illness. My family and close friends all know, and I actually tell people about the illness when I'm asked what's wrong with me. I'm not ashamed or shy about disclosing sjogren's, but I am no longer in the work force. It is quite a dilemma for those still working if they should talk about their illness or not. Whatever decision one makes will always be the bad one...if you tell, you will be judged constantly on your performance and if your employers and co-workers don't know, they will get the impression you're a hypochondriac, lazy or complain that you always take time off for sick days and appointments, which happened to me when I was still working. Whatever the decision, you should never apologize for being ill, it's not your fault!!