What if I can't work?

From the very beginning of the Unspeakable Bits blog, I have written from the premise that information is the counter to fear. I believe that wholeheartedly, and while it is sometimes difficult to face ugly facts about living with multiple sclerosis, I’d rather look at them than hide from them.

One of the most difficult aspects of living with MS comes if we can no longer work due to our disease.
There are loads of resources out there to help us decide when to disclose (or not). The government especially wants to help us stay employed. But even with rehabilitation counseling, we may get to a place where we just cannot work any longer. Because society often seems to value what we do more than who we are, this point in one’s life can be particularly difficult.

As a person who had found his calling, passionately pursuing my second career, and quite vainly defining myself by my work, it shook me to my foundation when I was forced to leave my job within months being of diagnosed with MSThe fact was – no matter how my employer, doctors or I looked at it – I just couldn’t do the work and all that went with it any longer.

I am not a “silver lining” guy. The financial hardships that came as a result of my disability were as crippling as the disease. To say I was unprepared for the difficulties of such an event would be the understatement of my life. There are some financial holes MS dug that I may very well never manage to fill back in.

For those still working after diagnosis, however, there is still time to prepare for this possibility. Some things to consider:
  • Do you have short and long term disability insurance (either though your work or privately)?
  • Are you paying all or a portion of the premiums of disability insurance? (I found out the hard way that this has serious tax implications if you make a claim).
  • Might you be eligible for a “supplemental income” policy?
  • Do you have long-term care insurance?
  • Are your savings and investments structured so that you can access them?
  • Do you have savings that can get you through until insurance benefits kick in? (Do you know how long that is for your policy?)
  • Should you begin to downsize your home/lifestyle now?
All of these are difficult questions to answer and may even be difficult questions to ask.

An MS Navigator (1-800-344-4867) can help you define the questions you need to ask, help find answers and connect you with helpful resources if those answers are hard live with.

Even if the answers you find aren’t very pleasant, at least you’ll know in advance and you can begin to plan around them. You’ll thank yourself tomorrow if you begin asking today.

Wishing you and your family the best of health.

Cheers

Trevis
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Trevis

Trevis Gleason, Blogger

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.  

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    24 Comments

  • Dawn   Jan 30, 2014 11:52 AM
    Thanks for sharing. Long term care insurance would be nice, but there is only one company that offered it with MS as a pre existing condition and they denied my application.
  • brian melton   Jan 30, 2014 11:55 AM
    Im going through it right now. It is very difficult to get on long term disability from short term. I have a complex story email me if you are interested.
  • Danyelle   Jan 30, 2014 12:01 PM
    Thanks for the heads up! Never hurts to be prepared & look @ multiple options. Fact we like to not face is that we may not be able to work (hovers over our heads like an eerie energy)
  • Erin   Jan 30, 2014 12:09 PM
    I had worked two jobs while earning my B.S. degree, and full-time (75 miles one way between my school and job) while earning my MEd. I had a job I loved, a 1 and 3 year old, made more than by husband and we were financially stable. I could no longer work (mostly cognitive but physically as well) within 2 years of being diagnosed. Received Social Security the first time I applied, and short term disability. I had also paid years for LTD, and UNUM has destroyed our security,, our future and many of my relationships. UNUM claims I do not qualify for LTD because if I weren't depressed I could work. They are now sueing us because they overpaid us for my STD. We are close to losing our home, we can't socialize or participate in a lot because we can barely afford to live day to day. I have learned that UNUM is infamous for processing claims in ways that they can be denied. They have faced many sanctions for their business practices. My point is PLEASE, if you are still working, investigate your policy holders, the fine print on the policy between your employer and insurance companies. I thought for years pre-MS I was doing the right things for my family and our financial security. It took a matter of hours for UNUM to destroy what I worked so hard for. Their denial was that I am unable to work because I am depressed. My brain and body have betrayed me-I can be a different person from minute to the next. I may lose my home, marriage and I am scared for my children's future- so yes, I probably am depressed, too. Please know your insurance providers before you have to stop working. Good luck.
  • Jeanne   Jan 30, 2014 12:22 PM
    Hi Travis,
    This is a topic that I can't stop worrying about on a daily basis. Which of course creates stress and anxiety which in turn impacts my MS. Yes, I have STD, LTD, even LTC insurance. I have savings and a home. I am so afraid of losing everything I have worked for over the years.I am afraid of losing cognitive abilities further and not being able to continue to work.
  • Sally   Jan 30, 2014 12:24 PM
    I was a nurse in a clinic setting working for a large medical group. One year, (about 15 years ago) during our insurance open enrollment period I noticed that long term disability insurance was only about $4.50 a month. What the heck I thought and signed up. Lo and behold I was diagnosed and had to stop working about 3 years ago due to cognative issues. It saved us financially. Serendipity. It's a wonderful thing.
  • Roxann Parson   Jan 30, 2014 12:31 PM
    I had long term disability, but they refuse to pay. Very few long term disability companies really want you to collect on policy. After battling Social Security, I gave up because I didn't want to stress myself again. By a judge, I was declared disabled the same day as my last day of work. I only worked half the day. According to the company, I wasn't eligible the day after last work day. Yet, they still won't pay.
  • Steve Z   Jan 30, 2014 12:34 PM
    Also, if you have Life Insurance, especially through work you need to read the policy. Many times the policy will have a "Wavier of premium" clause in it that states "If you become disabled we will continue your coverage at no charge". To me this was Huge, I wanted to know that I was going to leave something to my Daughter & Grand kids. My HR dept didn't even know about it, the insurance company must have "forgotten"...No body even mentioned it, I had to tell them. That translates to $4-500 per month which I never could have afforded. Also, if you have to quit working, read Every notice from SS & insurance co's they have dates that if you miss the deadline you lose.
  • Paula Zorek   Jan 30, 2014 12:45 PM
    MS joined our family 25 years ago.... Never did my husband joe Zorek consider himself disabled.... His employer did that for him.
    He was fortunate to have LTD, but has list other benefits. I'd like go hear from others that have been forced to leave the workforce to soon. Google Joe Zorek CVS Pharmacist.... This could be any profession and any employer!
  • Avatar
    mud909  Jan 30, 2014 1:47 PM
    I have lost a lot. Gave up my home and home business. I can no longer do the type of work I have always done. Gave up my high maintenance girlfriend. I am living hand to mouth right now. I have applied for SSI, but do not know what will happen.
    Today I have a tiny little home to live in out in the woods by the good graces of a friend. I have food, heat and my dogs to keep me company. I have been dating some lower maintenance women. I also have time to spend with friends.
    I have little material things, but I am grateful that my basic needs are met and have people in my life I truly love. If I focus on what I have lost rather than be grateful for what I have, I will make myself miserable.
  • Kathryn   Jan 30, 2014 2:07 PM
    Please don't for get beyond the financial issues to deal with. There is a terrible sense of loss if self worth due to identity so tied up in what we do for a living and our role in the contribution to society. Quite emotionally crushing too. Don't know how to say any thing positive on this particular subject must not have worked it thru all the way myself. God bless!
  • drowlee33  Jan 30, 2014 5:54 PM
    I'm just happy I somehow find enough energy to get out of bed in the morning.
  • Lori   Jan 30, 2014 8:38 PM
    I am going through this long process right now. I have to keep my faith in God. It is very hard. My ms effects my cognitive funtion my speech fatique and I have bulging disc now on bith sides of my back. I had to stop working i was a receptionist. I could not remember anything. Got to the point forgot literally what to say answering ghe phone.. Im waiting on ssi & ssd. Its such a sad depressing thing to go through. No wonder there are so majy suicides with people that get ms.
    I am thankful my mom is able to pay my bills to I get approved. But I do not know how long she can do this. PRaying they can fix this slow process for people.
    Thanks
  • msandreaw  Feb 6, 2014 8:04 AM
    I would like to know if any of the adjudicators that make the decisions know anyone personally with MS. Also the definition used to define disabled maybe needs to be altered for people with MS as many other illnesses such as cancer, Parkinson's etc. Are clear cut you have this you are disabled but Every person with MS,everyday is different and its truly hard to explain to anyone even your Dr. They say they understand, an they!?!?
  • barb berens   Feb 14, 2014 4:33 PM
    I recently became unable to work as a hair colorist as my tremors made it difficult and the cognitive issues and balance issues that I continue to have make it hard to make the best decisions and do the work at all. I had already been diagnosed when the long term care idea came around, so I was not able to get that. I am on state disability insurance, which I have paid for and after a year I can apply for Social Security Disability. By the time I am done, I will earn about 1/4 of what I was making less than a year ago, so new decisions have to be made. I am not worried, I just have to be smart about everything.
  • Gerri Ballas   Feb 18, 2014 7:14 PM
    Everyone with MS is a saint. The battle to survive a day, a week, a month is monumental. Faith has been my answer and lots of prayer. Otherwise I don't believe I could survive. We can only do what our energy allows and should feel no regrets or burden ourselves with "I wish I could". We must learn to accept ourselves and pray that others will accept our good days and our bad. Making it known to all you meet helps too.
  • Avatar
    mommywithms45150  Mar 7, 2014 8:40 PM
    Hi I am concidering leaving the work force because of cognitive issues, fatigue, and pain. Wanting to file for ss but scared to go thru the process because of the stress of it. I wish it was easier to get ss when having ms. Wanting to hear from someone who has gone thru the process.
  • jodi johnston   Apr 4, 2014 3:12 PM
    I had a job for almost 16 years. 4th and a half yrs I was on long term disability from that job. Then a got a letter saying they were letting me go. A form my doctor filled said I was unlikely to return so they took tgat and ran with it. I look at that letter a lot because one of those managers sat down with my husband and I and a couple of people from our union and said they would never do that to me. They did it and took away all my benefits plus extended benefits! My husband had nothing a at work for benefits. It has been really hard for me and my family. It was like starting all over again. All the paperwork and getting medication approval. Anyways its really bad. Thank you everyone for listening.
  • erfordyce  Apr 7, 2014 3:05 PM
    I am at the point where I am unable to continue bookkeeping, sadly I can not concentrate and making serious mistakes, I find myself fighting to stay awake. Sitting in one place for hours is painful. Considering disability, can anyone give me some advice on where to begin the process? Not sure where to start!
  • christinelee   Apr 21, 2014 6:35 PM
    MS-Joined me at the age of 28- The Dr's finally after Years, told me On October 28 / 1994. I was Really Relieved to finally get an answer-was Not what I wanted to hear but-I guess after year-after year, You get to the Point
  • Avatar
    mdonovin  Aug 8, 2015 5:50 PM
    please visit my new group I started to help the MS community deal with "stuff"
    looking for members to contribute and cope
    MS and Disability Checks "The Struggle"
  • Avatar
    Kstar  Jan 11, 2016 9:44 PM
    I would like to chat with barb berens who replied to this post..im also a licensend cosmetologist on ssi..i cant work fulltime and would like to know what else i may qualify for
  • tari   Mar 5, 2016 7:00 AM
    Good blog post ! For my two cents , if your company needs a Aflac S00224 , my husband filled out and esigned a template document here "http://pdf.ac/7kX1dE"
  • Julie   Jun 26, 2018 3:24 PM
    My MS seems to be affecting me more at work.
    Is there something on a site saying why you need to go out on a medical?
    I have sick time but, in order to use it I would need a reason why i need to be off.
    This would have to be done a certain way because, i have file twice with the division of human rights and once through EEOC.
    If you have any suggestions it would be appreciated.
    Julie