So How Did I Get from There to Here?
Written by Mandy on September 20th, 2007 in Emotional Issues, General, State of Health Care, Symptoms.
Five years ago, I had a well-paying full-time job with benefits including health insurance, 401k, a bonus, paid holidays and sick days, and three weeks paid vacation. I had responsibilities I took seriously, thought nothing of putting in extra hours when required and occasionally traveled for business. I was energetic and enjoyed my work.
Today, I have a part-time, hourly-paid job with no health benefits, no 401k, no paid holidays or sick days, no paid vacation, and no reason for a bonus.
So how did I get from there to here in five years? A few things contributed, but multiple sclerosis is THE reason I find myself in this position.
Don’t get be wrong — my job has a lot going for it. I’m not essential to the day-to-day operation, so when my MS is acting up, my employers don’t mind my absence and I, in turn, carry no guilt. I’m also able to take days off for vacation as I please. I have fewer constraints than my co-workers. I work with understanding and sympathetic people who have made adjustments to accommodate me.
As much as I would love to work full-time again and improve my income, as well as my self-esteem, I can’t. I can’t promise any future employer that I could hold up for 8 hours a day. Or show up every day. I have unpredictable bouts of fatigue and weakness, periodic vertigo, and often cannot drive myself to or from work.
On the other hand, I am not really disabled and, therefore, I can’t bring myself to call it quits and file for disability. I don’t think it’s the best thing for me. So I find myself settling in at a level of employment similar to when I was a teenager. It has not been particularly good for my ego, but it is very important for me to remain part of the working world.
I can only assume that there are many people with MS who are in similar circumstances. Caught halfway between able-bodied and disabled. Caught in an income quagmire and pondering the alternatives — work full-time, pushing yourself to the limit and hoping it all works out, or stick with a part-time situation, or give up altogether and claim your disability. It’s that proverbial rock and hard place.
If you have a similar personal MS employment issue, please share by posting under “comments”, or feel free to email me at: mandycane@comcast.net. I’d love to hear from you.
January 31st, 2008 at 12:10 pm
Hi Mandy, while I haven’t hit this point yet, I worry constantly about where I will be in five year’s time. I worry if I’ll be able to continue both of my jobs. I wonder if I’ll ever finish my doctoral program. It’s the uncertainty of it all that is alarming. Thanks for sharing here!
January 31st, 2008 at 9:14 pm
Hi, I found your blog through Lisa’s Carnival of MS Bloggers #3 and there have been times I worry about my current situation with my job which I have been working at the same place for 27 years. So far, I am surviving and hoping to last until I retire. I am add yours to my list to read in the future.
Jim
January 31st, 2008 at 9:47 pm
Jim,
I wish you all the best on your job situation and encourage you to come back and update us from time to time.
Thank you so much for visiting.
Mandy
February 2nd, 2008 at 3:35 pm
Hi Mandy,
I have had MS for 15-20 years, and am just now on short-term disability through my company’s insurance program (I am very grateful for that benefit and do not take it for granted).
It was not an easy decision and I studied alternatives for over 9 months. But I finally realized that my life was devoted to doing whatever it took to keep working, including giving up everything outside of work and popping too many prescriptions to push through the fatigue. I was “living to work,” not “working to live.”
I’m still uncomfortable being on disability, but my energy level is often very low and always unpredictable. Although I still have the bad fatigue, it doesn’t aggravate me so much now that I don’t have to deal with work. My self esteem has actually improved because I’m not grumpy all the time.