Grieving an Acquired DisabilityMay 26, 2010 • By Wendy Smith, MA, LMHCA, Disability Topic Expert Contributor
The onset of disabling illness or physical or sensory impairment is often accompanied by complicated grief processes, including depression and posttraumatic stress disorder. These grief processes are frequently developed in response to the concurrent losses people may experience when living with new abilities.
Most obviously, people who acquire a disability or disabling disease lose a part of their bodies and/or the functionality of parts of their bodies. Additionally, they may lose physical comfort, vigor, mobility, spontaneity, the ability to engage in certain activities, aspects of their previous lifestyles, privacy, a sense of dignity, a sense of control, a sense of efficacy/agency, a degree of independence, actual or perceived life roles, friends and other social supports, the ability to work, financial stability, their previous sense of identity and purpose, the ability to pursue previously established dreams, their previous body image, and, all in all, their previous sense of self as a whole. Therapists should be attuned to what a newly disabled person may have lost, or may perceive themselves to have lost, beyond the obvious loss of physical or sensory functionality.
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How well people adjust to this potentially staggering array of losses is usually much more closely correlated to who they have been prior to the disability, and what social, emotional, and financial resources they have available to them, than to how “severe” the impairment itself is. The huge importance of social support after a disabling event cannot be overstated; people with new-onset disabilities may realize how lucky they are to have loving people in their lives as they have never realized it before, or they may feel almost completely socially and emotionally isolated. The most difficult disabilities to deal with in regard to social support seem to be “disenfranchised” disabilities (e.g., those resulting from Fibromyalgia/Chronic Fatigue Syndrome) in which others do not quite believe.
Non-professionals wishing to support a newly disabled person can be most helpful by being available to him or her as a friend who is willing to listen and meet him or her where he or she is emotionally. Trying artificially to cheer the person up or suggest that the person does not, or will not, have losses is not helpful. Newly disabled people will “cheer up” once they have finished grieving their losses and reorienting themselves to their new situation, often with the assistance of a counselor or therapist.
Another key to successful adaptation to a new disabling condition seems to be successful identity reconstruction, a process in which therapists can be particularly helpful. This may often entail psychological, existential, and/or spiritual shifts in perspective toward valuing innate qualities (as opposed to physical or comparative ones), authenticity, and taking life slowly and savoring it. Identity reconstruction, it should be noted, is not necessarily a finite process, as some disabling conditions are progressive and require constant readjustment.
Keep in mind that a large number of the losses with which a person with an acquired disability must learn to cope are not due to the physical impairment itself but rather to limitations imposed on the person by society. Therefore, therapists should not insist that people with disabilities “accept” their condition of disablement as theirs to adjust to, rather than, say, as an invitation to fight injustice.
Ultimately, it is much more helpful for therapists to view identity reconstruction, rather than “acceptance” of one’s disability, as the end-stage of grieving an acquired disability.
© Copyright 2010 by Wendy E. Smith, MA, LMHC, therapist in Seattle, WA. All Rights Reserved.
Permission to publish granted to GoodTherapy.org. The preceding article was solely written by the author name above. The view and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.
MarthaMay 27th, 2010 at 4:16 AM
I completely agree with you that people who suffer a disability or similar issue go through trauma and experience a lot of grief.
When I was little, I had to get braces to fix my imperfect teeth and it was very embarrassing at school.I felt like I had lost something forever and would hardly smile.To have grieved so much for such a little thing,I can understand what a person would feel like to have become disabled.
Hence they require all the help they can get and all the possible counselling they can have immediately after the disability.
CarolMay 27th, 2010 at 4:40 AM
I know that when my brother became disabled due to a job related injury I hated hearing people tell him to chin up, it could have been worse, he could have lost his life. But to him he did. He lost the ability to work and provide for his family and for him that is his life. He went through a very serious bout with depression and anxiety and has been getting treated for that for years and I am not sure that it is something that he will ever be able to work past. He is a completely different person than he was before the accident and it makes me wonder if I will ever get my brother back.
webber R.May 27th, 2010 at 10:19 AM
it would really help if the person was sat and spoken to about what has happened in his/her life and the ways to cope with it and the person could also do with some inspiration. and of course this talking to has to be done by a professional who knows what a person would go through in such a situation.
Erma K.May 27th, 2010 at 6:55 PM
I’d feel uncomfortable and helpless even if I’ve got fever and had to stay at home…just don’t know how people who acquire a permanent disability deal with it…just hope there is a system in place to get them out of the low feeling and prevent them from taking any drastic steps.
A.S.manuelMay 28th, 2010 at 6:50 AM
I know at least two people who have ended their lives due to have acquired a disability and it is sad how we fight hard to save a life and just because there has been a disability that person decides to throw it all away in a moment…
audraMay 28th, 2010 at 10:26 AM
it can be really hard to get used to one’s disability.My aunt struggled with coping to herself after one of her legs had to be amputated after an accident.she hated herself for not being self-reliant anymore and for having to depend on others up to a certain extent.but she is much happier today than she was immediately after the accident.this is because she has got used to her disability and she has discovered that things are not really as bad as she had expected them to be.
SiobhanMay 29th, 2010 at 4:14 PM
Some people just have no clue what it is like to be disabled. They go around saying that things could be worse, but you know, they are not the ones dealing with all of those losses that the disabled person is feeling. Maybe if they could take just one minute to be in their shoes then they would better understand what the other person is going through!
Wendy E. SmithJune 16th, 2010 at 7:33 PM
Thanks to all who responded to this post. I am particularly grateful for your heartfelt stories of relatives who have been adjusting to acquired disabilities and of people who decided to commit suicide in the wake of newly acquired disabilities. These stories indicate to me that depression in people with newly (or relatively newly)acquired disabilities should always be taken seriously, and treated. Remember that depression may or may not appear in the first months after the disabling condition arises.
ElizabethJuly 9th, 2010 at 1:40 AM
Good comment Wendy. I am a person who worked with people with disabilities for over 20 years, assisting them to return to the workforce. I have been battling my own medical conditions now for eight years and finally had to resign from my position due to my health. I can tell you that next to divorce, it is one of the most difficult things in my life that I have had to deal with – and I used to counsel people with disabilites! It is also very difficult, as I have a condition(s) that people can’t see, therefore they are even more prone to not believe it does exist or most seem to think “its all in my head”. I have tried to over a year to deal on my own (i do however have a supportive family) and i honestly can not do it. I thought i could, and yes, suicide has crossed my mind a time or two, but i would never go through with it, i am smart enough to know that i do still matter to my family, even if i am “less than whole”. I am now seeking the help of a therapist, as i can’t “counsel” myself to get through this. Having to quit your profession is like losing your identity, truly. As your site states, one must learn how to be the new person that he/she is, and this is more difficult than i think most can even imagine. I say to those that are family members of someone with an aquired disability, to try and be understanding and know that recovering is a process, and one that doesn’t happen most of the time quickly. I’ve not worked in almost two years now, and i’m still tryingn to adjust. It also makes it tough that our SSA seems to follow the rule of thumb as most, if you can’t see it, it must not exist. This is truly a shame.
MeaganMay 17th, 2012 at 12:33 AM
This post means a lot to me! I have been wondering whether or not I need to do some grief counseling for my new disability. Reading this, after bringing me to tears, made me realize I do. I also appreciate the fact you mentioned chronic fatigue syndrome and how many people “don’t quite believe” what is happening to them. This has been a huge struggle for me since I have a harsher version of “chronic fatigue syndrome” where it affects my body more than the A-typical. Thank you for posting this! Again, it means more to me than you know!
LizNovember 20th, 2014 at 8:54 PM
Chronic illness sometimes, as in my own experience, disables one slowly and insidiously. My doctor encouraged me to continue working for as long as I could because she knew I would suffer from a loss of identity and independence. I understand her thinking, but if she and my husband could have walked in my shoes during the last year or two that I worked they might have encouraged me to quit sooner.
Patients who are becoming gradually disabled need help recognizing and communicating their physical pain, grief and quality of life. Especially those with little support from friends and family. They should be encouraged to trust their instincts as to when they are no longer able to work. It’s hard enough dealing with the fall out of encroaching disability – explained so well in this article – without also feeling that they can’t stop working to care for themselves because they can’t afford it or that they would disappoint everyone around them.
A. JoyFebruary 25th, 2015 at 7:00 AM
As a person with MS, Multiple Sclerosis, I wanted to point out that, sometimes there isn’t really a “newly acquired” to Disability, as much as a gradual process. Sometimes we can initially “become” disabled, having a support system of people around who are supportive and helpful. Then the disability gradually becomes more pronounced, making the basics more difficult, and that “support system” gradually disappears. It is important to realize that the grief process may be a long-term, ongoing process,mover a number of years. Just because someone has not “newly” acquired a disability does not mean that they “should have” reached the end of the grieving process.
For me, the process has been about 5 years, so far. I became unable to work about then, but was still able to do some self-employment, on a limited basis. The important part had been being able to work at my own pace, resting whenever it became necessary, not having deadlines, per se. At the time, I had a partner who was very supportive, many friends and a fairly active social network. Over the years it has become more and more difficult to function on my own. Outside situations added stresses that caused me to loose my house, and some income, making daily living more difficult, and that difficulty lead to the loss of that “support system” that I had built around me. Many people could not deal with the changes in me, that those changes in circumstances caused. Depression and anxiety can wax and wane, depending on physical changes, and life changes beyond our control. Those things can make it harder to maintain connections with the people around us. That increases the need for support, but often that support can not stay and watch the changes.
Thank-you for bring this to light.
happyeggheadMay 24th, 2015 at 1:47 PM
After a 35 year career helping others adjust to illness and disability, I had to retire due to a combination of issues. I was born with a form of Muscular Dystrophy but is didn’t get in my way until my late 50’s and it began to progress. I then had two serious illnesses within a year and I fully agree with Elizabeth. The “loss of identity” is a devasting change to ordeal. My condition is not visible other than the cane I must now use to navigate curbs and stairs – and that in itself is a body image injury. I have learned to be a new me, but it doesn’t take away from the fact I still miss who I used to be!
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