Tuesday, March 26, 2013

When Your Illness Steals Your Career

Drawing the job-snatching Sjogren's Syndrome burglar is even harder than sketching gossiping T-cells.

My goodness.

I can certainly empathize with a reader who is disabled due to autoimmune disease, was denied her first application for SSI disability, and sent me this question:

My struggle is with the guilt I feel for not working. I feel like I am not carrying my weight. They are days I feel like I could maybe work, some that I don’t think I could. Then I start to wonder, is it in my head, have I just gotten lazy? Should I drop the appeal (for SSI disability) and look for work?  I was wondering if you might touch on this topic in your blog? I would really like to hear from others that may find themselves in this position.

I know how this reader feels. I wrote a post about my specific reasons for leaving the workplace back in 2009:

Recently, someone asked me why I am not working. I haven't heard that question for awhile, and it took me by surprise. The person who asked didn't know me well, and was only responding to my now automatic answer when she asked - "So, what do you do?" I replied with my usual "I'm a retired nurse" routine. She looked at me quizzically for a few seconds and remarked that she had heard there was a nursing shortage right now; implying that since I looked somewhat normal that I should really be wearing scrubs and schlepping my stethoscope around, which brought to mind what a difficult process it was to arrive at that humbling decision to leave nursing. 

I'll bet many, many other sjoggies out there have wrestled with the work vs. disability issue. It is so difficult since making this choice forces one to closely examine our lives from so many perspectives:
  • How will this impact my family's finances? 
  • How will this affect my marriage or my relationship with significant others if I'm not contributing anymore? 
  • How will this affect MY self-esteem if I had previously put a great deal value on my career?
  • How will the affect my responsibilities as a parent? 
  • What will I DO all day if I'm not working? 
  • What will I tell everyone? 
  • What will I say to people that are judgmental about my decision? 
It's hard. Really, really hard. 
The Sjogren's Syndrome Foundation has created a very helpful patient education sheet entitled Tips for Obtaining Disability Benefits From the Social Security Administration (SSA). You can read it here.  

How have YOU dealt with this very trying situation? 


Amy Junod said...

I think our mascot has a villain. I like that drawing. I think I will print a copy of SS Thief and throw darts at it.
Your posts are always great for me- like therapy in a way. They help me sort out my own feelings on a topic and resolve thoughts that weigh me down.
I realized after reflection that my reluctance to apply for SS benefits is partly due to my drs not understanding how impaired I am. I may be fine during my apt. but by the time I get home I'm spent. If I can't convince my docs how seriously this is effecting quality of life, how can I possibly convince a government worker?
I for one am glad that you're here for us. Blessed that you're here to help us navigate through stupid sjogrens stuff.

Anonymous said...

I was only diagnosed in January of 2012. I'd been feeling symptoms and things for quite some time, but like so many other chalked it up to other things. I stopped working back in the Summer. My days were filled with fog and being unable to complete a simple Excel spreadsheet really frustrated me. I would come home and need to decide between cooking dinner and being a good Mother and Wife, or sinking myself into the recliner and letting it all go. My final decision moment came when my Son said, "Mommy, all you ever do is sleep. Why can't you go with me to the park?" I cried, cried, and cried a little more. The guilt was overwhelming. He was right. I was missing it all. I stopped working. Had a great Summer, felt good and started to wonder if maybe I'd acted too quickly and gave up a job with really great people. Then...winter came. I think we all know what that means. I have felt pretty rough for 3 months. I've had more bad days than good. There is no way I could have been working. I'm not on disability, not sure I'm ready to fight that battle, but...I'm really blessed with a hard working husband. I feel overwhelmed that he must shoulder the financial burden, but he tells me I need to take care of me first, in order to take care of the family and be part of it. I think he is right. I wish you all much luck in your decisions regarding work and more good days than bad!

Unknown said...

One thing a good friend reminded me of that made me feel much better was how much I do on good days, and that makes me far from a lazy person. She said "If you felt good, I know you'd be doing _____."

There are a lot of people who are quick to make negative judgments of others. Most of them are not worth knowing.

Unknown said...

Fortunately I am still able to work, but this is a real concern for me. Many days I wonder if I am pushing too hard, however I also think I would miss the socialization and of course the benefits. I definitely can see how this would impact your family overall and sense of self worth. I agree with Amy too - many doctors don't understand how truly sick we are...Too bad more could not spend a day in our shoes...If you cannot get their support, how can you get disability? p.s. - I am a pie baker myself and was VERY impressed with your pie! BEAUTIFUL!

Anonymous said...

Wow, I really struggle with this. I am newly diagnosed and only 35, but I see and feel my days in health care are also limited. It exhausts me. I hurt after being on my feet all day. I expose myself to "bugs" that then cause me to flare up. Nobody understands it. I know, deep down, this can't go on forever...and the long term picture of family finances is NOT going to be what we pictured. Thank you for your blog!

Heda said...

I too really struggle with this one. So far I've kept working but the only way I've done that is to sacrifice almost all other aspects of my life. Work:rest:work:rest and that's about it. I live alone, my townhouse is tiny and easy to look after but its getting run down because I can't do much more than the absolute basics of bed making, laundry, dish washing and floor sweeping. Sometimes I can't even do that. My close friends are really important because I live alone but I have little to give them so I'm always pushing myself too hard to spend time with them to keep them in my life. My family is the same. I can't give them what they deserve. Especially my sister because my Mum is 91 and very frail and my sister is having to carry that load. I don't go on holidays any more. Way too hard. I'm always just desperate for time to rest. My health is definitely suffering as a result of this constant desperate pushing myself. Sometimes I'm so tired I can barely sit upright let alone stand and not to mention put one foot in front of the other. Is money worth a miserable existence? I don't know any more. But how to live without it? Or am I just being greedy and not trusting enough?

annie said...

Sometimes, you don't really make a choice to work or go on disability, but the choice is made for you. Are you able to function at work and do your work well, then go home to live your normal life with your friends and family and do all the chores that we all have to do to maintain a home?

I was on short and long term disability for some time (4 years) and then suddenly cut off and deemed to go back to work. Doctors (paid by the insurance companies)force you to go back to work even with many different diagnoses, and doctors' reports telling them them the patient has degenerative, progressive and debilitating conditions and cannot work anymore. After 8 years and 2 refusals by disability insurance, I was finally accepted in February.I have decent days and bad days, but I don't have bad days like I used to when I was working because I can take care of myself now. If I'm tired, I lay down.If I have no energy or feel lightheaded, I sit. I don't have to fight traffic day and night. I save my energy to make my family a decent meal for dinner. On days when I have a little more stamina,I space out my little chores so I don't tire myself out. I feel more stable now than when I was forced to work, so if you can go on disability, do so. Sure we will never get rich on the salary, but think of your health.

Tana said...

I've been doing the disability debate since December when I lost my job. I'm not surprised they let me go since I just couldn't do the job any more. And that was working from home in my jammies. I know it's time to pack it in, but I HATE it. I want to be my old smart, ambitious self again. My 30-year old son sent me a great job lead for fantastic full time job just today. He still thinks of me that way (thank heavens). As I read it off to my husband in a wistful tone, he, who sees me every day said - no, of course not. So, I guess I'm going to apply for disability. Like your other reader said, just gotta convince the doctors, etc. that I'm as sick as I know I am. I always put on the makeup and nice clothes for the visit. Next time - no makeup. Let him see the rashes and puffy red eyes. Anyway, Julia, thanks for the push and assuaging my guilty conscience.

kara said...

My mom was diagnosed a few years ago. She's struggling with this now. She wants to hold out for another two to three years, but I don't know how realistic that is. I'm relatively healthy and I can't imagine working the kind of hours she does.

Christine said...

I left a successful nursing career in November 2008 because of Sjogren's, although it was not diagnosed at that time. I, too, sometimes debate just like the reader who sent you the question if maybe I could work pert-time. However then a new Sjogren's related complication comes up and I am hospitalized or laid up and I remember why I am on disability in the first place.

Even when I am not in an active "crisis", I have many days where I could never get through an eight hour shift of doing anything, not just nursing. hat is hard for many non-disabled people to understand is the unpredictability of our illness.

I do have hope that someday my illness will be controlled enough to go back to work part-time.