Is it possible to still have a job?

[Sjogi32]

Hi All,

It's me again, the newbie. I'm just wondering is it possible to hold down a job with Sjogren's? As I'm in my early 30s I'm starting to think about career options/career changes. Maybe doing a masters or a phd to retrain in a career that is more sjogren friendly.

Just wondering if anyone has any thoughts or advice on this.

Thank you!

[Deb 27]

Sjogi32, I think that we each have to make these decisions for ourselves for our situation. I think one of the most important aspects would be to choose a job that has good benefits such as sick leave and disability benefits.   Maybe flexible hours or even the flexibility to work from home would be nice. For me, a job that is too physically challenging would be tough. I have a desk job and I am grateful for that. it's also a fairly low stress job. When I was younger, I worked on my feet and sometimes double shifts in a hospital. I went back to school and changed fields even before I found out I had an auto immune disease.  I hope you find a good solution for yourself.           

[Sjogi32]

Thanks Deb 27! I'm still trying to work out what this all means so it's hugely helpful.

[SJSman]

Hello Sjogi32,

You won't know what you can do until you try to do it. 

I have observed for myself and almost everyone else, that we tend to do as much as possibly can and live as normally as possible when we are first diagnosed with any serious illness, for as long as we can possibly do it, and then a bit more as we simply refuse to cave in and operate totally on willpower.

The ONLY thing that will typically stop the average person is when we reach the point that we simply cannot continue - it is no longer possible by any trick or strategy.  This causes the big crisis/reality-intrusion as we fail in whatever we were trying to do.  For some reason, or many reasons, no one ever seems to stop going before that point.

Your illness may never become so severe as to stop you from accomplishing the things that you want to do, so go ahead and continue doing whatever you want - in my experience you will anyway, everyone does.

The only tiny shred of wisdom I will try to pass on is - try to have a "Plan B" just in case you really do become so sick that you can't do what you want.   

If you can't come up with a "Plan B", then I suggest that you keep on going forward anyway.  If you do get stopped from being able to do what you want to do, then your "Plan B" may simply be whatever happens next - some catastrophic but survivable dramatic and damaging fall from your old normal self and your old reality.   It could potentially be better to develop your "Plan B" in advance of needing it - or not - it all depends on your specific situation.

An example of this for working would be - work as long as you can, and you may very well make it to retirement age.

However, your "Plan B" in this hypothetical case might be to learn any complex rules for gaining a disability retirement, or some other source of income and possibly health insurance if you could potentially need it in the future - while you continue to work as long as you can.  If you wait until you sick, learning and quickly implementing a highly complex and ultra-serious process of converting to a non-work status may be more ungraceful than if it was planned and understood in advance.

[Sjogi32]

Thank you so much sjsman, such an insightful post and great advice. I went through denial and am slowly coming to acceptance as I start planning for the future.

I'm super grateful for your post.

[irish]

Plan B is a necessity when dealing with a chronic disease. I am a registered nurse and I had to quit jobs and rest to recover several times and then went back to work. I was not diagnosed or even treated or listened to for close to 40 years so I just was always sort of winging it.

I did change jobs in 1998 and went to what I thought would be a less stressful job with less distance to commute. It ended up bein a very demanding job that I loved and by the time I quit 5 years later I could hardly walk and had been so sick that I thought I would drop dead at work sometimes. I should have quit earlier but you know how that goes. We just keep on pushing until there is no push left.

You are so right to find something else that interests you that would be easier on you physically. The stress is always a big thing as stress can do such a job on us. Good luck in your endeavor. Irish

[Sjogi32]

Thank you Irish, this is very reassuring and helpful to read!!

[quietdynamics]

At the lab I use for blood test one of the techs (about same age as myself) has sjogrens and does not take any meds.

Sjogrens is not, as we know, one size fits all, and presents-runs along a spectrum of presentation.. what stage we are are in, what if any treatment protocol we are using.

I was Dx'd late.. and determined disabled.
I still miss my career.
In fact when treatment protocol was changed my first thought was I could volunteer within my field.

I have known people with lupus, a Dr. with severe Rheumatoid Arthritis, people going through chemo working... so anything is possible when it comes to a career.
Most people in today's economy have plans "b,c and d"  The stress of added educational debt is major consideration.

I read you were offered Plaquinel.. one or two per day.
Retinal issues are rare.. and dry eyes can cause "Sjogrens Damage" as well .. so your eyes need to be monitored.
Plaquinel takes up to 6 months for many to reap full benefits.

[irish]

It is true that there are more people out there who are sick that we don't know about. Remember that autoimmune people don't always look sick. My hubby and are went to a gastroenterologist who had Rhumatoid arthritis. He was the one who diagnosed my hubby with celiac sprue and this doc was tuned into autoimmune diseases. We could always tell when this doc was in a flare and in pain plus increased prednisone cause he would get so ornery. He was a nice guy in spite of it all.

He and I got into a verbal combat of sorts one time and the people in the room across the hall had eyes as big as saucers. This was a doc who you could go around with and disagree with and still be friends. Don't see many of those. He is long retired now and I miss him. He would let me stand next to the table when he did hubby's colonoscopy's. This was in the days when the scopes were done in a room in the clinic on a cot with the doc in a gown and on a stool. Comp. screen and very informal. A little IV med and that was it. Much cheaper when they did it that way. Just reminiscing of the old times. Thanks. Irish

[Dawnmist]

My answer would be: it depends on how the disease actually progresses for you.

For some people, the fatigue it causes makes it impossible to be out of the house for more than an hour or two at a time. They are unable to get through a work day, and struggle getting through even necessary activities like doctors appointments, etc.
For others, that's not as big a problem. They can manage part time or full time work - but some of those are then exhausted and resting over the weekend to have enough energy to make it through the next week.

For some people, the muscle pain/tendonitis/inflammatory issues can be severe enough to ruin their ability to concentrate enough to actually be able to work effectively.
Again, others don't have the same level of problems - or have good doctors that help them get the pain back to manageable proportions.

For some people, Sjogren's causes their immune system to attack their nerves. This can cause both/either debilitating pain or loss of movement ability. Even then, some of that can be controlled for a while at least...

I finally got diagnosed with Sjogren's just over a year ago. I think at that stage, I'd had it for almost 23 years - and had studied and worked for most of that time. I still work 4 days a week. I don't have the energy to do 5 days - I had to cut back almost 10 years ago. I have nerve damage that without medication is painful enough to make even holding a spoon a struggle...but with medication, I am currently still managing to work as a software developer with a few minor modifications (e.g. I cannot use a mouse anymore - I use the disability/accessibility setting built into each operating system to control the mouse cursor with the numberpad of the keyboard. I also have to keep long fingernails to type on - it causes too much pain to type on my fingertips - so I get acrylic nails put on so that my fingernails don't all break). I've changed doctor, got a good team of specialists together, and they've been helping me to keep the symptoms under a reasonable level of control. In doing so, I'm actually better now than I've been over that whole time (other than the nerve pain itself).

Only you can determine whether you can still manage to work - my advice would be to keep trying. Don't give up just because a label got put on you explaining what's happening in your body. Don't let the label itself scare you. The whole point of that label is to identify what the disease process is that is occurring within you - from which they can determine treatment options/etc. Find a good doctor, one who you can work with and who will help you stay functional. Good treatment can make a huge difference. Don't be afraid to ask your doctors for help - or to tell them when things are not working for you and ask about alternatives. That's what they're there for - and any doctor that doesn't welcome discussion isn't worth sticking with!

[lorigacc]

Thats what I am trying to do now.  I have used ALL of my sick time, so that's not heading anywhere good.  I would advise to keep on trying.  I take one day at a time.....and do a lot of praying.  I turn 62 next year, if I NEED to retire. I would rather be healthy and work.  Best of luck to you.

[Scottietottie]

Hi 

I developed symptoms in my 30s but got no diagnoses until my 50s. I brought up 4 kids (not alone) and did part time work on and off till my youngest was 12. Then I got a job as a youth worker. Worked until 4 years ago, although latterly it was part time again. Retired aged 60.

Social life was pretty non existant but I found it possible to work. We are all different though and are affected differently too.

Take care - Scottie 

[Pud]

I think what a lot of the other have said rings true. It really depends on the type of job you have and the way your illness affects you. Like Irish i am a registered nurse. I'm 43. When i was first diagnosed 8 years ago I was working full time in the hospital setting and always getting sick. I would get every bug going around and it was wearing me down badly. I changed jobs to a sit down telephone triage job and have hardly been sick since. My symptoms actually went into remission until just recently.

Having said that though, my degree of sjogren's has not every been very involved. I've been very lucky to be only mildly impacted by it. So yes you can have a job, depending on your career, the severity of your illness and how you manage it

[bloodless]

I thank God my job is a desk job. I never would have been able to continue working otherwise. So yes, you can keep working, just as long as it's a job within your physical abilities. Good luck on your career change.

[billygolf1000]

I was diagnosed about a year ago, sick for four years now.  I still work full time and hold a high level position in a small medical firm.  I don't want to stop working since I love it here but may do four days a week then three.  I am 66 years old.  Neuropathy in my legs, feet and pelvis are the worst for me.  They may try IVIG if I can get it approved.  So, I still can work although some days are tough.  I try to keep a positive attitude and drink one martini, ice cold when I get home then kiss my wife.