SCI Burnout
Living with a spinal cord injury isn’t necessarily a “job,” but to anybody living with paralysis, it can certainly feel like a job. Recently, the World Health Organization added burnout to its International Classification of Diseases. The definition of burnout used by the World Health Organization relates to stress caused by a person’s job and/or workplace. The symptoms of burnout include feelings of energy depletion and increased feelings of negativism and cynicism toward one’s job. Individual experiences will vary, but in a typical week I spend approximately 30 hours dealing with situations that I would not deal with if not for having a spinal cord injury. Coincidentally, 30 hours also happens to be the generally accepted threshold for a job to qualify as full-time.
Over the years, these 30-hour work weeks add up and can take a physical and mental toll on an individual. The biggest difference between a “spinal cord injury work week” and the standard work week is that there is no escape from the daily grind of living with the injury. The pain, spasms, caregivers, bowel programs, accessibility issues, insurance battles, and everything else that comes with the injury never really go away. Most people take vacations to get away from their jobs, but those of us with injuries often dread traveling because of the stress caused by worrying about damage to our wheelchairs and finding accessible accommodations. Needless to say, burnout is often an inevitability when living with a spinal cord injury.
Since there is no vacation from the injury, it is important to find ways to manage the stress. Oftentimes, people put their head down and push forward through the difficulties of the injury. This can work for short periods, but it is important to acknowledge the stress we deal with. I have found that talking to others with spinal cord injuries is the best way to vent our frustrations. We all deal with unique but similar situations that only we in the spinal cord injury community understand. It can be helpful to know that others deal with the same problems and that we are not alone. Being able to say “this really sucks” to someone who understands can be a powerful thing.
It is also important to take care of ourselves physically when dealing with stress. Stress can cause many physical symptoms like elevated blood pressure, ulcers, and weight gain. All of these can complicate the problems that come with a spinal cord injury. Exercise is a good way to take out frustration, and can also help manage any physical manifestations of stress. If exercise sounds like too much work, finding an escape by watching a movie or listening to music can be effective in reducing stress.
Life with a spinal cord injury comes with many challenges that very few people will ever understand. Managing the full-time job of living with the injury while participating in the other things we want to can be difficult and lead to burnout. It is important to know that the challenges we face are real and it is okay to acknowledge that the stress that we feel is valid. Everyone encounters feelings of burnout at one point or another, and it is good to know that we are not alone.
Written by Mike Franz
Mike is a C6 quad from Michigan who has been injured 16+ years.
Great article, I have lived with paralysis for 30 years and to say it can be stressful is putting it lightly. The longer you are in a chair, the more worn out your body becomes making it increasingly more stressful each year that passes. I have found the best stress reliever is finding something you are intrested in (a hobby for example) and spend time on that. Make sure it is a hobby that doesn’t just remind you that you are differently abled. I like to paint and play piano and dabble in photography. There are beautiful things in this world to still experience so don’t give up!
Exactly I’m a T-11 paraplegic. I’m 51 years old and 33 years post injury. I had the pleasure of working my dream job as a healthcare chaplain for 15 years but it wore me out. I had a co worker who was able bodied and after my job call me lazy once. I went off on her she had no clue what it took for me just to get to work. Over time I ruptured my bicep and have 3 tears in my right rotator cuff. I’ve been bedbound almost 3 years waiting on my sacral wound to heal so I can have shoulder surgery. I appreciate your article. We need each other for support.
If you add full-time employment on top of it, it’s even more of an effort.
As a physician working with SCI patients for more than 20 years, I think this needs to be made more visible to healthcare clinicians, because this is not widely disseminated. I think employers need to be aware of the value of individuals with disabilities, but incorporate strategies that reduce burnout.
My advice as a C5 complete for over 42 years is get your bowel and bladder routine sorted. Secondly get a ROHO cushion and check it regularly. Have your bum checked everyday and NEVER get up if there is a pink spot. Find out how the pink spot got there and sort it out.
Once your bowels, bladder and pressure problems are sorted enjoy your life. Get a drive from wheelchair van – it normalises you for sure.
I have had an almost normal life. Stress free and never complained once. I am here to advise anyone battling out there.
Anyone saying “they live an almost normal life” as a wheelchair quad is delusional. There is no real honor in “never complaining”. As a 13 year wheelchair bound quad myself that had 30 years of able bodied joy, you wouldn’t even know what normal is if this is the life you’ve gotten use used to. “Get your bowel program under control” well no duh.
The embarrassing above snarky comment I made is a prime example of what day to day SCI life can do to one’s attitude. I’m on a particular bender and apologize for my tone, it childishly undercuts the success (that we each have to define for ourselves) you’ve been able to achieve. I’m sorry.
Great article. I have been the CEO of the QuadPara Association of South Africa for 18 years and I in my 35th year as a C5 quadriplegic.
It has been an incredible journey, but tremendously challenging with travelling at least 15 nights a month away from home. However, a career QASA pressureIs not sustainable together with a spinal cord injury as a quadriplegic. You have to look after your body and your mind and your soul as well as make sure you don’t leave and miss out on relationships and friendships in this journey.
I don’t have a SCI, but I was caregiver for my wife from 1977 till February of this year when her body was set free from the confines of a wheelchair. She was a C5/6 complete. I never fully understood the relationship between stress and physical health, until mine started to deteriorate. I didn’t know about self care until my granddaughter explained it to me.
I had the opportunity over the years to counsel with some who found themselves in a similar situation, my first advice was always, get professional counciliing now because your mind can only tolerate this for three years maximum before it starts to give in to the thoughts of suicide. I miss my wife more than I can describe and I don’t regret one minute of the time we spent together.
We were three years into our journey when a home health nurse, after asking about my wife’s wound, stopped and asked in a genuine tone, “how are you doing” ?
No one had ever asked me that before, and forced me to think about it. That’s when I broke down.
I continue to pray daily for a cure for SCI, those who are new to SCI are living in a time of great hope, as science today has changed the prognosis from “never” to “soon.”
Everyone should read this article it really says a lot! For anyone who does not know what it’s like to be in a wheelchair for 20 hours a day can’t fully understand what it’s like. I as a mother whose son is in a wheelchair and has been for seven years can’t even imagine what it would be like, I am very proud of him though! I’m sure he has good days and bad days that I am not aware of, however he goes to work every day does things around the house and looks at life in a different frame of mind then we do he looks at the things that hecan do not to things he can’t do. There’s a lot of things that go on behind the scenes that people don’t know about and I’m sure they can be very stressful! Not to say, what it cost to live that life. Medical equipment is not free by any means and is rather expensive. Medical insurance doesn’t always pay for everything either. So I hope some of you will take the time to read this article because it is very informative.
I have been paraplegic since 1995,I’ve had 3 kids since,I’m married to a wonderful man,my kids since growing up think they can walk over me cause im in a wheelchair,think again kids it ain’t happening.I find every day hard,I suffer with pressure sores which means bed rest,I used to play football before my accident that was what I wanted my career to be,that went out the window,I cope with it but find life hard,able bodied people dont realise how disabled people feel,how hard life is day to day,the things we have to do every day just to help ourselves try and stay well how hard it is to stay the correct weight,and lose weight,amongst many other things.
Majority of us have to stay in hospital for sometimes long or short periods of time which is hard leaving family,I know I had to do 4 months when my daughter was 5 months old,the hardest thing ever I had to do was leaving her so young even though my brilliant hubby was home looking after her.All this takes its toll on not only us but our partners and kids.
Living life disabled ain’t easy and being a mom trying to keep my kids in order and doing chores every day is a job n half alone,I say a big well done to those who work and being disabled.
This is exactly the way things have gone for me. I have always sacrificed my energy into being as independant as possible. Looking after yourself as a Tetraplegic is a full time job. No one ever really understands what is involved in managing bladder, bowel, skin and bathing/showering. The lack of strength in the arms and grip in the hands make everything I do challenging but I enjoy thinking of ways to overcome these problems. Sometimes I just have to stop and go to bed when I burn myself out.