Adjusting to disability
Jan 3, 2000
Dr. Shernoff , Hi , I am a 30 year old male collecting disability due to HIV related arthrilgias and moderately severe neuropathy . I'm having a difficult time adjusting to a new self-image and lifestyle of a disabled person . Frequently people making conversation will ask me what it is I do for employment . I find myself feeling quite uncomfortable with and resentful of this simple question and as often as not I will tell someone I am still in my former line of employment. Adjusting to a body with many physical limitations has been difficult for me as well . Before neuropathy became an issue I was very active running five miles a day , taking long trips , hiking , boating ,skiing , dancing etc. Painful nerve damage and arthrilgias have stolen my muscle tone away and I am not able to enjoy the activites which brought me joy . Don't get me wrong although I am whining now I am grateful to be alive yet at the same time I can not seem to shake the rage over losing pieces of myself and my former life as well as identity to this virus . After years of struggle to overcome repression and limitation in my childhood , teensand even early twenties I at last felt FREE and in control of my own life and destiny only to have that freedom vanish yet again .The last thing I want is to end up a bitter sour person . When I am not angry it as if my world has taken on a dull sheen. The pleasure I expirence post HIV is a whisp of the pleasure I felt in pre sickness days . Its such a sharp contrast I often feel totally different,somber and cynical . My closest friends aren't even aware of the feelings I am holding inside because I keep up appearences and smile and laugh no matter what is going on . Yesterday someone I know said to me " you must be the happiest person I know . Everytime I see you out you are always smiling !" I laughed and joked with him but I was thinking I could win an Oscar for this performance move over Leonardo DeCaprio! Please help me to regain some objectivity and perspective on my life situation . I want so badly to feel like myself again Thanks for listening , John
Response from Mr. Shernoff
Your question is so rich in complexity and relevance to many people today that though I am unhappy that you are experienicng this very distresing situation, I am glad that you posed the question.
There are two keys to making this transition. You will never become "your old self," and first you must accept this with all the accompnaying grief, loss, rage etc that accompanies this recognition. In order to do this you have to stop looking outside for power, self definition or validation and inside yourself to who you are as a survivor of AIDS adjusting to a vastly changed life due to the ravishes of this horrendous illness. You have suffered enormously and continue to suffer, experiencing numerous losses which have negatively affected the quality of your life. How could you not have alot of feelings about this?
When someone asks what you do for a living, you can just tell them that you are retired. Saying this instead of I am on disability is doing a reframing of the situation in your mind so that instead of feeling the variety of feelings that result in you feeling badly at this normal question you have the potential to feel empowered as you are recreating your life.
It is very hard to do this transition alone. I urge you to get into a group at a local AIDS service organization where you can be with other men and women struggling with this very issue. Additionally it would be very helpful to you to begin professional counseling with a therapist who is very skilled in working with people with HIV around this issue.
A colleague of mine has written a great chapter, that though it deals with people returning to work after improvements in their health as a result of triple combination therapies, the first part deals with all the psychological and interpersonal menaings of work for people with HIV. His name is Michael Bettinger, PhD and the chapter is in my latest book called AIDS and Mental Health Practice: Clinical and Policy Issues, published by Haworth Press. If you are unable to find the book in the library or order a copy, you can e mail Dr. Bettinger at firstname.lastname@example.org and ask him to send you a copy of the chapter that appeared in my book. In case you are in the San Francisco area, that is where he is located and he is a nationally recognized expert in working with people in your situation.
I hope that htis is helpful.
Michael Shernoff, MSW
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