My Mother has MS (Multiple Sclerosis). She was diagnosed in 1997 and
has tried several types of treatment for her disease both holistic and
with medication. She has been shut off from the outside world due to
her inability to walk. She doesn't like letting people see her this
way, and rarely goes out of the house or gets out of the bed. All she
does is watch TV, read magazines, and talk on the phone. 2008 was the
worst yet, she had more relapses in 2008 than ever before. Most all of
the time she is in high spirits, and doesn't seem to be in pain, but
she is. Whenever anyone calls, she seems to be doing really well and
feeling pretty good.
I heard before, somewhere, that there is a mental condition where an
individual relates themselves to having a disease and they somehow
only hold their identity as someone living with the disease. She lives
through her MS. She can explain how she feels in amazing detailed
descriptions. Almost as if she gets enjoyment of letting you know
exactly how she hurts. But she doesn't let the hurt show. She will
tell us about it, but not openly show the pain. My Dad is the only one
who sees her suffering. He himself just went through major surgery and
cannot do as much for her as he used to. She has to start feeling
better, at least mentally, or she is just going to keep going downhill.
Is it possible that somehow, unconsciously, she cannot feel better
because maybe she feels that if she didn't have MS, she would not have
an identity? How can we help her? Is there another way to make her
feel that people will still call her even if she doesn't have MS
problems? And it would be healthier to live beyond the Ms. I know she
can't cure it with her mind, but I do know it can only help.
I hope this makes sense. Thank you for time.
Your letter makes perfect sense, and I am sorry for your suffering, as well as that of your mother. Since you mentioned relapses, I am going to guess that your mother's multiple sclerosis is of the relapsing variety, which means that it may not worsen significantly with time as the so-called "progressive" form usually does. This also means that her disease probably is not fatal, meaning that she will likely die not from her disease, but from one of the same causes as those of us who do not suffer from MS: heart disease, cancer, stroke, etc. This means that besides the difficulties occasioned by the symptoms of MS, your mother should expect at age 49 to live a good while longer, so it would be wise for her to try to get a better grip on the emotional side of her situation.
It is not uncommon for people with chronic diseases to identify themselves primarily in relation to the disease as you say your mother seems to be doing. And this is complicated because while it might seem as if your mother is just too wrapped up in feeling sorry for herself, or in her pain, emotional or cognitive symptoms may be brought on by areas of MS damage in those parts of the brain associated with thinking processes and the emotions so that her being so wrapped up in her disease and wanting to avoid others could be, at least partially, a symptom of MS.
Help for your mother in this situation should begin with an interview with a psychotherapist experienced in treating the psychological and social aspects of chronic illness. This person could be a psychiatrist, a psychologist, or a social worker with counseling training and experience. A good therapist could become the listener to complaints, and the primary source of emotional support so that your mother would not need to make her disease the paramount topic in social situations or family conversations as she now does. Good therapy might also encourage her to get out more, and spend more time with others.
Since you are so concerned about her—and with good reason based on what you have written—you might begin by investigating what is available in your area, and then setting up an appointment for your mother and accompanying her there. Be in touch with the National Multiple Sclerosis Society to find out more about services available in your area.