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The challenge of working with dysautonomia


For most people working is a necessity, a passion or a combination of both.  For a chronically ill person it can also be a burden.  As an illness progresses, continuing to work may require making very difficult choices.

I was very lucky to have worked in a supportive environment, in a career with some flexibility at its core.   Many people are not as fortunate.  Employers may lack the understanding to give the employee what they need, or, in many cases, the nature of the job itself prohibits any changes to accommodate illness. 

So what does happen once you have used all your sick days and vacation time, and you still cannot get yourself through the workday?  For many chronically ill people, the decision of what to do is not left to them. You are forced out of the job you need and possibly loved before you are prepared to go.  You want the time to explore all the possibilities before deciding whether continuing work is right for you and your employer.  In my case, my employer worked with me to adjust my schedule, and to change some of my responsibilities.  Unfortunately, it was still not enough for me to remain in the job.  Finally, I made the decision to stop working and devote what little energy I had on learning to cope with my illness.  However sad and frightening it can be to leave the workforce, there can be silver linings and a sense of relief once the decisions have been made.

The nature of your job and the limitations of your illness will help you make the right decision.   Consider the following when trying to resolve one of the most difficult aspects of chronic illness - work.

1.  Explore all possibilities – Can you adjust your schedule to make it easier on yourself?  If your medications make you tired, can you take them on a different schedule?  Are there physical aids that may help – ergonomic chairs, adjustable desks, speech to text software, etc.?  Can you job share with another worker?  Can you transfer to a different department or job that may be easier for you to handle or have hours more suited to your day?

2.  Have the “talk”  Most people struggling to keep their jobs are terrified that their bosses or HR will find out that they are ill.  However, if your illness has progressed to the point where you are considering these issues, then in all probability your co-workers already know you are ill.  In truth, their imaginations might be creating scenarios that are much worse than what is really happening to you.  This does not mean that they are entitled to pressure you to divulge medical information that you may not want to reveal, but you do need to share some of your struggle with the people who may be able to help. 

3.  Know the financial impact  Research your options for disability pay, Social Security, medical insurance, etc.  There is much to consider.  Before your paycheck stops, you will need to know what programs are available.   In the U.S., some states have disability insurance plans that will cover you for the first 6 months after you stop working.  Some companies have disability insurance as one of your employee benefits.  Those plans typically cover you for 6 months at a percentage of your gross salary.  Both state and private plans are considered “temporary” disability coverage.  But you may be able to qualify for that coverage while you apply for Social Security Disability Insurance (SSDI).  Be aware that in some instances, SSDI can take a year or more to begin and frequently may require filing an appeal to get approved for coverage.  Plan for this if possible.  If you have medical insurance through your job, find out how long your coverage will continue and at what cost.  Medicare will become available once you are approved for SSDI, but only after a 24 month waiting period has passed.  Some countries have Disability Living Allowances for the disabled person and sometimes caregivers, depending on the situation.  Your children can receive aid if you are disabled.  Each country is different and you need to know your rights.  Explore the rules regarding your pension and 401K or other retirement benefits.  In some cases, because of disability, these plans can be accessed without penalty. These plans may be critical towards helping you meet your financial obligations until your SS and Medicare kick in.  There are also Medicaid options if your income is within certain guidelines. Some social service agencies have services that may help in this search.  These professionals know all the criteria and eligibility guidelines and may also know about services that would be difficult for a layperson to find.  Go online, talk to people, explore and prepare.

4. Be completely frank   Talk to your family and your doctor. Tell the truth about what you are feeling and what your days are like.  Try and discern what you really need. Will a temporary break to give you some rest and a chance to regroup improve your situation?  Or is your fatigue a permanent part of your life now?  Decide whether working is adding to the quality of your life or detracting from it on a holistic level.  Are you so ill at the end of the work week that you are missing out on family life on the weekends?  Does your spouse see negative changes in your moods at home and your ability to parent? Explore with your doctor and family to see if these things can be managed differently or if work is negatively impacting your life in more profound ways.  One of the defining moments for me was realizing that I required a two hour, mid-day rest to be able to think clearly and relieve some of my pain.  My doctor helped me to understand that this was a part of the illness and wasn’t something temporary. 

5.  Discuss other work scenarios  Could you work differently? There might be financial, emotional and social benefits of finding work in a business owned by a trusted friend or family member. Isolation can be a very real part of disability.  Work can help you manage your illness by offering distractions, social interaction, and emotional support. If you can work it may help you maintain a positive mental attitude.  Don’t give that up unless you have to.  But if you decide that being home will serve you better, then plan for ways to make up for that loss of social and emotional support.  Find ways to stay in touch with friends.  Look to connect with new people.  Since finances can be a struggle, find simple pleasures that won’t cause financial stress.  We often forget how many “free” things in life are available to us and how much they can nourish our spirits. Reading a good book, listening to music, meditating, visiting or calling a friend, watching a movie, taking a walk (if you can)….all will fill your spirit and not break the bank.

6.  Helping others   There is no better way to feel better yourself than making someone else feel better.  Even if you are accepting help to manage your day to day life, that doesn’t mean you cannot improve the life of someone else.  Helping others doesn’t only mean volunteer positions that may require a drive across town and a 10 hour a week commitment. Writing a blog about anything you feel passionate about can help other people. Posting to a patient forum is a wonderful way to help others.  You can share information and support with other people going through similar health trials.   Look for a support group that you can participate in. Support a fundraiser for a cause dear to your heart.   Are there skills from your job that can be useful to other people still in the working world?  Can you mentor someone pursuing a similar career to yours?  Focus on the things you can do instead of the things you can’t and you will discover many possibilities. There are many things you can do from home and online.  Just the act of thinking of ways to help other people will do you a world of good.

7.   Your job did not define you, you defined your job  People bring their personalities, their strengths and weaknesses with them to their jobs.  No matter what your position, the way you did it, was all yours.  Those qualities are what define you and they don’t go away when the job does.  Amy Morin, author and psychotherapist, wrote an article in Forbes magazine recently about self-worth and self-esteem.  She lists 5 common things that most people use to determine their self-worth – what they do, how much money they have, the people they are around, what they achieve and how they look.  All five are greatly affected by illness and whether you continue to work. 

If you have always looked at such external factors as the measuring stick for your self-esteem, you are more likely to feel depressed and disconnected when you stop working.  As a society, we spend more time finding out what people do instead of who they are.  It’s no wonder there is such a feeling of loss when you can no longer answer the question “what do you do?."   Examining what is at the core of who you are as a person is essential.  It sounds cliché but it is a worthwhile exercise to think about how you would spend your last day on earth. Very few of us would answer “at work.” So how can work be at the heart of our definition of ourselves? Don’t be too proud to ask for help if you need it – there are therapists who work with the chronically ill and they are most experienced in helping you deal with any depression that may come up.  If you are a person of faith, consulting with your pastor or priest may help set you on your way.  Finding an illness support group in your community or online can be a wonderful way to connect with other people going through what you are.  The group may be filled with people who can offer you guidance as well as companionship and understanding.  

In the end, doing our best whether we continue to work or we decide we are best served at home, is essential.   We can’t choose whether we are in pain or not, or ill or not, but we can choose how we deal with it.  Making these critical decisions about work are part of dealing with our illness.

A few links to helpful articles:

Social Security Administration:  Disability:

Life after work, when chronic illness makes you quit a job:

Working with chronic illness:

Managing chronic illness at work – NYTimes:

5 Ways You’re Not “Living” with Chronic Illness:

Edited by edriscoll

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