Denial, Bargaining, and Disability: Adapting to a New Reality

There are many parallels between living with a disability and dealing with an uninvited house guest. If you have ever had an uninvited house guest, I am sure you remember moments when things may have been uncertain and, at times, tense or uncomfortable. At the very least, having an uninvited guest requires some adjustments, much like living with a disability.

An uninvited guest may arrive unannounced, leaving no time to plan or prepare. Likewise, in many cases people living with disability have little or no time to plan for the many changes to come. While there may have been no way to prevent the disability and requisite life changes, having time to prepare—psychologically and literally—can make a huge difference in a person’s ability to adapt and cope.

A period of psychological adjustment is required for a person who has a disability, his or her spouse/partner, parents, and other family members. The adjustment process people frequently talk about resembles the grief process in many ways. Like the grief process, people often experience feelings in what seem to be stages. Similar to the grief process, this adaptation process usually begins with a period of denial.

In my work with couples and families living with multiple sclerosis, I often hear concerns that one person seems to be “stuck in denial.” To people who have moved through the initial denial stage, it may seem as if their loved one is not progressing as quickly as others. The truth is, different people work through this period of adjustment differently, and it takes as long as it takes. The denial stage usually happens at the time of diagnosis or disability, and may come up again at other times. For example, in a progressive illness, if one begins to lose mobility or other limitations arise, the initial stage of the adjustment process may be triggered again.

It may seem clear to a caregiver/partner or family member who has been helping someone walk even short distances that a mobility device is needed (cane, walker, scooter). For the person who is having mobility difficulty, admitting that it is time to talk to a doctor about a mobility device may affect his or her identity, hope for recovery, or future progress. If so, working through the denial and bargaining, and then later stages of adaptation, may be necessary. It is not unusual to see all members of the family triggered by new developments that start the process over.

Denial is believed to be a protective measure that prevents us from becoming emotionally overwhelmed. Denial slows down the process of coping with traumatic events, giving us more time to psychologically prepare ourselves for the onslaught of feelings. The process of denial, known as a defense mechanism, should not be rushed or sabotaged by well-meaning loved ones who are at a different place in the adaptation process. Doing so can cause the person who needs more time to become emotionally overwhelmed without the necessary skills to cope effectively.

Coping skills: A person with disability and his or her family members should try to be empathetic and understand things from the perspective of others. Be honest, but gentle, about your perceptions. Choose the time to discuss these issues carefully—not when either of you are tired, frustrated, or angry. Always talk to your loved one(s) before bringing up concerns with doctors or other professionals.  Caregivers and family members should keep in mind that their needs are important, too. Take care of yourself and make sure you have plenty of support. When children are involved, be very careful what and how you share information with them. Children need to hear things based on what is appropriate for their age and stage of development. Ask for guidance from a professional if you are unsure how much to tell children or how to talk to them about disability.

The stage that usually follows denial is bargaining. During this time, people often are looking for second opinions, alternative therapies, and other remedies. It can also be a time when we promise the gods that we will turn our lives around if given a second chance without the disability or diagnosis.

It is true that finding the best medical providers, keeping a positive outlook, and staying informed of new research and possibilities is important. However, this can also be a time when people are vulnerable to scams and false promises. Unfortunately, there are a lot of companies and people who offer products and services that guarantee outcomes without doing the necessary research required to back up those assurances.

It is a good idea to check out any new or experimental treatments carefully before trying them—particularly if there is a large commitment of money, resources, or time involved. Check with local and national nonprofit organizations that provide services to people with your specific issue or health challenge. Agencies such as the National MS Society, American Cancer Society, and others often have information about ancillary and alternative therapies. They may be able to send you information or answer your questions.

Coping skills: Make decisions together based on facts. Find local and national organizations that you trust to support you and provide well-researched information. Be sure that any second opinions or ancillary providers have access to all the information you have from other providers. In some cases, taking medications or treatment without being fully aware of how they interact with your other treatment can be life-threatening. Make a commitment to fully investigate any new or experimental treatments before deciding to try it. Ask for and check references when appropriate. Verify the credentials of all providers before visiting them. At some point, you may have to accept a new reality that you had not planned for and do not welcome. If you have prolonged difficulty coping with the diagnosis or prognosis, find support from a professional or support group to help you with the transition.

Over the next few months, I will explore additional aspects of disability, how it affects the lives and relationships of the people involved, and ways of coping with these situations. If you have ideas to share about how you have effectively coped with any of the situations presented, please join the discussion by leaving comments below. Likewise, if you have questions, feel free to ask for input from others who read the blog.

© Copyright 2012 All rights reserved. Permission to publish granted by LuAnn Pierce, LCSW

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

  • Leave a Comment
  • harper t q

    October 17th, 2012 at 3:23 PM

    It’s that denial thing that tends to get patients in the most trouble.
    They act like if they deny that something is happening that it will go away.
    Wrong answer!
    That’s probably the worst thing that you can do when you are faced with a new challenge!
    The best thing that you can do to overcome any new challenge is to confront it, learnd about it, educate yourself, and make some smart decisions.
    I have not had too many serious problems resolve on their own, have you? Didn’t think so. So why is it that denial is kind of our default mose when we are facing a difficulty in life?

  • MATT3R

    October 18th, 2012 at 12:01 AM

    Meaningful analogy between disability and an uninvited guest.The latter gets on my nerves and I hope I dont have to deal with the former.

    Its never going to be easy to move to the adaption stage quick enough and especially to a fully functional working person.And more than the physical aspect of it I think the mental aspect would weigh heavily.Suddenly becoming dependent on your family members and not being able to follow your everyday routine.I just hope people who encounter such a situation find themselves with adequate support and are better prepared at any time.

  • Dwight

    October 18th, 2012 at 4:08 AM

    I like the analogy between this and ann unwelcome house guest because that is exactly what it feels like at times. And you do start bargaining, trying to make deals with yourself or even with God that if you do this then will He let this just go away?
    Even though we know that this is not possible rationally, we all do it and have done it in our lives. What would be more productive for us if we are going through a traumatic experience like this would be toreally buckle down and try to impact our life in a way that is going to help us get the right treatment instead of sitting back and twiddle our thumbs, asking for intervention from the gods.

  • LuAnn Pierce

    October 18th, 2012 at 8:38 AM

    So much of how we react is an unconscious process – like breathing – that we really can’t intervene to make a better choice until we realize, or become consciously aware of what we are doing (or not doing in the case of denial). At that point, we can usually see that we are having irrational thoughts or behaving in ways that are irrational. Until we ‘wake up’ from the psychological protection that denial provides – almost like a barrier to keep the mind safe from the overwhelming reality of the situation – we really aren’t prepared emotionally to cope with the full reality of our situation.

    It is easy to look at our thought processes in hindsight or as an outsider and recognize the irrational behavior. While mired in denial, that rationality is not available to us. As our psychological coping abilities become more readily available to absorb the full impact of the situation, the reality of our situation gradually becomes apparent.

    In short, denial is not a choice that we make consciously, it is an unconscious reaction, like breathing, that keeps us safe until we can manage the full shock of the situation. It is hard to understand and accept, like much of the inner-workings of the mind and body.

  • sabrina

    October 18th, 2012 at 8:45 AM

    @harper t q: you are right. denial can cost a lot more than it seems.but its not that easy to get over such a thing and be accepting of it when you put yourself in their shoes.I think inspiration and a little bit of a talk from someone who can handle it is what is needed.many times just talking about a bad situation makes me feel better so maybe the same will work for people diagnosed with an illness or those who have recently developed a disability!

  • Grace

    October 18th, 2012 at 11:24 AM

    This happened to my cousin.
    She got MS at about 27, was always this beautiful graceful dancer and then this hit and she nor her husband could deal.
    he went off and had an affair and she has been stuck and depressed for a long time now.
    She lives like life is over and I want her to get past all of that but I know it has to be hard.
    How do I convince her that this is the chance for a new life, maybe different than hers before but a chance all the same?

  • Pamela

    October 19th, 2012 at 10:41 AM

    I’ve always believed it is better to face the facts and accept them than to be in wonderland and not even plan ahead.Make the best of any situation,no matter how bad it is.There is always choices and we need to make the best,no matter how bad the situation itself!

  • lea

    October 20th, 2012 at 8:04 AM

    Yes, it is hard to have your life turned upside down by something like this, but it does not have to be the end of the world. There are plenty of people who live life everyday with a disability or handicap and they get along just fine. Most of life if not all is what you make of it. If you choose to dwell only on the negative then there is a good chance that this is where you will get stuck. I on the other hand choose to look at the sunnier side of life. No one said it will always be easy but it will be so much better if just accept that this is the test that you have been given and only you have the ability to make the most of it or let it beat you down.

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