How Do You Tell Others?

[Pisces24]

Sorry about all the questions but I am very new to SJS and was just officially diagnosed 4/23/09.
I was wondering how you all go about tell others about having SJS. I think most of my relatives and friends understand but I don't know how to go about telling this to acquantances and people I work with.

For one thing, if you Look ok people assume you are fine even though you don't feel ok. The corporate "work world" precludes you from staying home everytime you are sick also. (2 wks notice)  I have a co-worker (former BC survivor) that treats me like I have the plague everytime I get a sniffle.  Thankfully so far my symptoms have been mild (I guess) but I have gotten "sinus infections" that have knocked me for a loop w/fatigue, nausea, etc.  Also the rheum dr thinks my "so called allergy problems" of the past are really SJS. I am the type of person where I really have to be really sick to stay home too.

Maybe I think too far ahead   but dr says I have had some progression w/SJS and my crystal ball isn't working to tell me how far it will progress or how fast. I just want to be able to explain it if stuff gets bad, especially to my supervisor at work.   Also, I once heard that FMLA doesn't have to be for 6 mos and it can be a shorter time period if you "are on record" with something. Does anyone know about that?

I am very level-headed but tend to try to plan for eventualities or as my grandmother used to say "meet the devil at the door before he gets there".  Think it is due to being a past caretaker for my parents. Any advice you could offer would be greatly appreciated.  Thanks a whole lot!!!

[jonnell]

Pices,  I know what you are going thru.  My daughter Jenna is 4 and she has sjs but she is a big girl and everyone says but she looks so healthy.  I tell people that she has the sister disease to Lupus people seem to know more about that.  Jenna gets a lot of sinus infections and a lot of headaches from them.  We put a humidifier in her room and I put vicks vapo steam in the medicine cup  it seems to help her a lot.  I know some people with sjs go on social security disability if they cant work because of being sick.  People can be so mean when they dont know what a illness is.  But sjs is not contagious as Im sure you know.  My thoughts and prayers are with you.  Hugs Kisses and lots of love,     Jonnell and Jenna

[JannaLee]

Yep, I say what Jonnell says.

I usually say I have a disease that is closely related to Lupus and commonly referred to as the "...but you look great!" disease.  Then I tell them I am extremely grateful to look very healthy even though I am not.

I was diagnosed a year ago and now people are starting to ask EXACTLY how does this disease affect you.  To which I answer, "I feel like I am coming down with a real bad flu 24/7.  Very achy all over, extremely fatigued, and nauseated"

I used to tell the 'autoimmune description about my system attacking exocrine glands, etc'  but found people don't want to know that stuff.

[dbab]

Pisces,  I worry about this a lot with myself also. 

I haven't gone into detail with my boss about what it is I have.  I'm so scared that I will lose my job if I'm viewed as defective in any way.  I know silly, huh?  I have mentioned that I have arthritis to him but that is how far I have gone.  I don't have a solid diagnosis (I'm diagnosed as UCTD) and I'm in my early-mid thirties so disability would almost be a "not even a chance" thing so I really need my job. 

I don't know what you do for a living as I know this can affect things also.  I know I haven't given you any answers but just wanted to know that you aren't alone in this.

[Pisces24]

Thanks to all those that replied.    I absolutely agree it does make you feel like you are coming down with the flu most of the time.  I guess over the years I've gotten so used to it that I don't go to see a doctor until I think it gets bad.  I am concerned however about the dr's throwing me antibiotics for my sinus infections due to 1) usually takes 2 rounds to get rid of 98% of it and 2) I don't want to build a resistance to antibiotics.

Yes, the job thing has me concerned in the future.  I am very good at my job - great reviews and  work 98% on the computer and 2% on the phones in the pension/401k field.  I only get 5 sick "times" per rolling year that are unscheduled at work. 6 & 7 are warning letters and at 8 you are out the door period. I got to a 6 one yr and had dr's visits to PROVE I couldn't come in but corporate amercia doesn't give a durn on that. Rules are rules. 

I think I will speak to an attorney who understands FMLA to find out what my options/rights are in case I have episodes where I can't work or such. I just don't know what to expect with SJS and the dr's don't sound like they know either so it just sounds like we have to deal with precarious health all our lives. 

I just want to have the knowledge to "stand up for myself".  I used to "go to bat" lots of times for my parents as their caretaker but you know caretakers generally put themselves last so this is relatively new to me too.
Thanks for all the support and letting me whine a little.

[lynnmarie219]

Hi Pisces!

Don't ever worry about asking questions here...that is what this place is all about and we all learn from each other!

I usually tell people that sjogrens is a cousin to Lupus or very similar to MS...these are things that people understand better than sjogrens. Sometimes I try to explain a little more to people about the basics if they really want to know (people that are closer to me). I tell them that instead of my body attacking things that shouldn't be there (like a virus or other outside critter) like its supposed to do...mine attacks the good things in my body which are usually moisture producing organs (lungs, digestive system, mouth, eyes, etc). This is pretty basic but people get the idea! 

Then there are those people I don't even bother mentioning it to because they really don't want to know how I feel...they are just trying to be polite. At work, there are some people that know some, others than know a lot, and still others that don't know anything about it or how I deal with my symptoms. It depends on who they are and why they would need to know or if I feel comfortable telling them. Its different for everyone.

As far as FMLA goes....I have the paperwork filled out for my sjogrens at my place of employment. This doesn't let my days off of work for illness or appts/ count against me when its related to the sjogrens. My time off can be taken  in any increment and it doesn't have to be for consecutive days or weeks or months. I still use my sick or other benefit days but they cant let those days off count against me unless they add up to certain number ( I cant remember but I think its equivalent to 12 weeks if you are full time) within any consecutive 12 month period. FMLA protects the employee up to that number, but then it sides with the employer if you go over that 12 week mark in any 12 month cycle, in which case they don't HAVE to hold your job open any longer for you.     

I hoped this helped a bit and didn't confuse you more...its hard to explain so I hope it makes sense!

[eyeamdry]

Lynnmarie said a very important thing about handling her FMLA.  I'd like to add that people should be cautious when they tell their employer of an illness.  In other words, if you don't have to at this time, keep it quiet.  Yes.  The less your employer and co-workers know about you the better.  If you're experiencing many problems with SJS (or anything) this won't be possible.  For the person just diagnosed, don't bother heading to HR and laying all out about your new "disease."  It usually isn't as bad as we expect.

This is important in the times as they are.  Employers are looking to pluck anyone off the books they can, especially if they're costing the employer $$ in insurance and sick time.  I think consulting an employment attorney about this decision if very good.  I'm retired (on disability) but I'm glad I don't have to go through this maize any more.  Working in the business world for 40+ years, I just know that HR is on the employer's side, not yours.  It is best to have your facts in place before the situation presents itself.  But, do not offer information "for the heck of it." 

Lucy

[Victoria05202000]

Pisces,
I say the same as everyone else. It is the sister disease of Lupus or MS. (People are familiar with these two)  I also have FMLA paperwork filled out at work so my absences will not be held against me.  Both of my doctors (rhuemy and nephro) signed a paper stating that I can be out twice per month for an undetermined amount of days. Basically, I could be out a whole month if I feel like it, although there is a clause that they will hold your job for 3 months worth of leave per calendar year. After that time frame they can replace you if they need to. I won't say that it doesn't happen, but I don't think it would with my company unless I was out like a year or something. I have been taking a few extra days off the past six months because of sickness due to Sjogrens and my kidneys shutting down, but everyone has been understanding.  

BTW- I have been diagnosed with Sjogrens since 2004. I just let everyone know about this at work last summer when I was going through some problems...mainly my kidneys shutting down and now I am preparing for a transplant. I just filled out the FMLA papers a few months ago.

[Lotus1]

Yep, not easy telling others.  Nowadays I say it is a mixed bag similar to CFS, FMS, MS etc & most get the idea.  Used to go into detail, but like others found people didn't grasp it.
I've been very fortunate re sick days.   I work in a Police Station as support staff & sergeants are used to officers being injured/sick which has probably helped.  I always ensure I call in to say I can't make it & there are no questions asked.  I've had so many absences (including lengthy ones!) in the past they got used to it.  I also ran out of sick leave so had no pay on occasions.  Even inspectors know all about me & pop by to say hello & ask if I'm feeling better on my return. It sure helped my stress levels.  Now I've things under control more I have very few sick days.
I trust you'll be able to explain things to your supervisor so they fully understand, are sympathetic & most important you don't get stressed. 
Thinking of you.
Lotus1

[Patze]

Hi Pisces,

I'm sorry to hear that the corporate world just will not bend a bit...and neither will some people - they don't want to know.  The others do have a good point about telling your boss about your illness's; sometimes keeping it close to the vest is sometimes better.  BTDT.

I smile because I told one of my coworkers about some of this mess, and all I heard was "well this person had that and it was nothing", or "that person has this and this is a bad disease".  Okay, I listened until it got to the point where I couldn't stand it anymore (talking months here), I cut loose.  I finally had to tell her that if "it was nothing, why the heck do I take so many meds?"  That shut her down, and she's not mentioned it again. 

Don't get started on these people, where the heck do they learn their manners?  Guess they aren't "old fashioned" now a days, and parents just aren't teaching them anymore.

Hang in there and take care -

Patze

[Jonneelshubbytobe]

People always say children are cruel well so are many adults and what we don't understand we fear. Stay tough and remember that there are many people that care.

[lurkernomore]

Victoria, if you don't mind my asking, were your kidneys shutting down a result of the Sjogren's? When I read that, my heart skipped a little bit, as I am battling with both Sjogren's and Diabetes. So my kidneys are somewhat of a concern. Thanks in advance!

[wednesday mc haggis]

pisces

its a good question, i tell ppl its dryness everywhere, all over pain in joints and unexplanable fatigue, and their eeys just glaze over and yup so and so has this or that which is worse.

Now i ask, do you really want to know ?? if anyone says yes, i say im dry like a bad hangover, sore like a bad flu, and tired like ive not slept well in a week , everyday, still their eyes glaze over, ya cant win eh ??

   have you read the spoons theory ?? its a great way of explaining it to family and friends, helped my kids and partner understand it

http://butyoudontlooksick.com/the_spoon_theory/


just click on link on the page

T x

 

[Victoria05202000]

Lurkernomore,

According to all the tests and the biopsy I had back in 2007.... yes.  At first, because of the generalization most Docs make with Sjogrens they found it difficult to believe. My case is considered RARE, but I do believe in the past year or so, awareness of Sjogrens affecting SOME patients is alot worse than they (medical professionals) imagined.

If you have uncontrolled diabetes or even just for "peace of mind" request at your next visit for them to run a renal panel on you.  The two main causes of kidney disease/kidney failure is uncontrolled diabetes and uncontrolled blood pressure. Like I said, my sjogrens case is rare.  I have more details on my blog to raise awareness and just to keep me sane.    Feel free message me if you like.

Take Care,
Vicky

[Marmotte]

I have given up on telling people because they don't get it and they expect whatever it is, it will go away like a cold. So when they ask how I am, I just say, "doing well, thank you." Some close family members actually totally forget. I think only one (my hubby) even remembers the name. If they mention it at all, they call it "that thingy" or some other remark that kind of seems to say they think it's pretty insignificant.

Well, maybe it's better that way because I've never enjoyed people feeling sorry for me and I hate being sick. Once in a while I have to say I can't do something and people are so surprised and a little suspicious, I think!

LOL