Tag Archives: job planning with chronic illness

Book Review By An OTR: Life, Disrupted; Getting Real About Chronic Illness in Your Twenties and Thirties

Although I work in pediatrics now, I spent the first 10 years of my career in adult ortho-neuro rehab. This means that I worked with many young adults facing issues from RA, MS, Lupus, spinal cord injuries, and more. They were just getting started with jobs, raising children, and making an adult life, but they had to deal with chronic disorders that impacted every part of daily living. And their needs were different in some ways from the older patients, who developed issues in their 60’s and 70’s or beyond. THEIR children were grown, their careers were often over, they had saved for retirement, etc.

Why am I writing a review on a book about ADULTS? First, many of the kids I treat will grow up to be adults with chronic issues. Their parents may or may not acknowledge this at 3 a.m., when they think about their child’s future with some fear in their hearts. Second, the PARENTS of some of my clients have their own issues. Sometimes the same ones, but sometimes lightning does strike twice, and the child has a different issue or issues from the parent’s own concerns. Either way, people want ideas and the feeling that they aren’t the only ones dealing with these issues.

This book is written by Laurie Edwards, who faces a chronic respiratory illness with a combination of determination and honesty that other adults with chronic illness will find refreshing. She isn’t shy about describing how it has affected her relationships or her ability to look at her future. But the book includes many other stories. Within the book you will meet a college student with Ehlers-Danlos syndrome, a young mother with another respiratory illness, and others with common and uncommon diagnoses.

Chronic disorders or illnesses can make immediate decisions harder, but they make plans for the future harder as well. I have felt strongly that teens with chronic illnesses need to plan their careers based on more than their talents. The realities of living in the US mean that having health insurance isn’t a given. Having the ability to take paid leave isn’t either. The “gig economy” isn’t kind to people with chronic disorders, and until our country decides to change this, it is important to choose education and training that will allow a person with a chronic illness to obtain good care. It really can be a “life or death” decision.

Ms. Edwards also takes on the decision to bear and/or raise children. Although there aren’t any specific strategies offered, she walks the reader through her process, and the decision-making of other people with chronic illnesses and conditions. One of the great gaps in care, IMHO, is care for mothers with chronic disorders. Raising children is hard work. Hard physical work, hard mental work, hard emotional work. Lots of joy, but lots, and lots, of work. Protecting their health when faced with their child’s needs often means that women sacrifice themselves and do not realize that there are options that reduce risk while being the great moms they want to be.

The lack of useful information from the therapy community is just astounding. We know a great deal that could make life easier, but there isn’t anything available to parents unless they are lucky enough to have generous health care coverage that provides them with therapy sessions. I have found YouTube videos on lifting and carrying kids when you have physical disabilities…none by therapists. We know so much about this topic, but parents seem to have to figure even this simple thing out for themselves. When understanding the principles and their own abilities could make them empowered to plan for each situation as it comes along.

For more information, read Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues and Parents With Disabilities Need The Happiest Toddler on the Block Techniques . To read posts about children that have relevance for adults as well, read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies and When Writing Hurts: The Hypermobile Hand .

Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues

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It is graduation time here in the U.S.  Kids (and parents) are thinking about the future.  But when your teen has chronic health conditions, the future can be uncertain and the decisions more complicated.  I know that the saying “Do what you love and you won’t have to work another day of your life” is very popular, but the truth is that career planning is much more than finding your passions.

Here are a few things to think about:

  1. Every teen needs to learn about their interests and their skills.  Regardless of medical concerns or limitations, picking a career path that doesn’t match any strong interests is a plan almost certain to fail.  It’s not just that doing what you are drawn to feels good.  There is a medical reason to pick a career that they don’t hate;  if the greatest part of the day or week will require them to do tasks they dislike or find boring, they are at risk for stress-related flares in their condition. Similar concerns exist when a career choice doesn’t match their skills.  Loving what you do but not having the right skills or talents is very frustrating.  It could be harder to get and keep a job without good skills.  Help your teen identify what interests them about life and school, and where they truly shine.  If your teen hasn’t had a chance to observe people working in the profession(s) they find interesting, make sure that they do so before they invest time and money in training.
  2. Look at potential careers with an eye to benefits, job demands and scheduling flexibility.  Most adults with chronic health conditions want to be employed, and every one of them will need health insurance.  In the U.S., that means finding a job that provides insurance or purchasing individual coverage after aging out of family policy coverage options at age 26.  Generous sick days and personal days are perks every employee desires, but for people with a chronic illness, those benefits allow for medical treatments and rest during periods of symptom flares.  The NYT has written about the fact that insurance isn’t total assurance that chronic illness won’t create major stress ,but insurance is essential.  Think carefully about the working environments common to a particular career path.  Some careers will have a high-stress pathway (i.e. trial attorney) but also less demanding types of work within the profession (in-office counsel).  Other careers require a high degree of physical stamina and skill.  These may not be the jobs you would think of right away as physically demanding.  For example, preschool teachers and hairdressers are on their feet most of the day, every day!  I have read posts from a former preschool teacher with hEDS that is now on complete disability payments.  Her career of sitting and bending and lifting little children has cost her a lot.
  3. Career planning and completing required training while living with a chronic and possibly progressive condition may require outside support.  Teens that have been able to perform in high school without any compensations such as 504 plans may need more help in college.  Higher education often expects more independence and more mobility (think large campuses and internships) from students.  Most universities have an office for disabled students. Their staff will work with students with disabilities to create a plan, but it is the student’s responsibility to inform the office of specific needs and to develop strategies with the staff and faculty.  If your teen doesn’t want to be “identified” as disabled, this is the time to talk about being proactive and positive.  Finding assistance and receiving effective support could make all the difference.
  4. Explore local and online support groups.   Adults with your teen’s medical issues may have useful strategies or tales of caution that will help you develop a plan or expose problems that you haven’t anticipated.  Remember that personal stories are just that: personal.  Experiences are quite variable and it is difficult or impossible to  predict another person’s path.

For a book that can help teens with the big transitions and the small challenges, check out Book Review From an OTR: Easy For You To Say Q and A’s for Teens Living with Chronic Illness or Disability This book will be a great resource for life issues big and small.  If you or your child isn’t a teen any longer, read “Life, Interrupted” by Laurie Edwards.  She speaks about her challenges with a serious respiratory illness, but the issues regarding school, work, relationships and acceptance are all relevant.

Read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies to learn more about what your teen needs to know to avoid accidentally creating damage because they don’t know what NOT to do!

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