I feel so isolated with MS...is this normal?

Here is My Question:
Emotionally draining??? Am I the only one that feels exhausted by my MS? The feeling of no one understanding me or my husband telling me I keep talking about my MS and for my own sake it would be healthy to just let it go......this is true but at the same time I feel very isolated with this unknown disease. Are these normal feelings that come with MS???

Answer:

Dear Writer,

People with MS often feel that their loved ones do not understand what it is like to live with MS. They forget that before MS became part of their lives, they didn’t understand it either. We turn to those who are closest for support and encouragement, but there are times that we need to talk to someone who really ‘gets MS.’  The people who ‘get’ MS best are other people who have MS, and contact with them can reduce feelings of isolation. They can be found in in-person support groups, offered by your local chapter of the National MS Society http://www.nationalmssociety.org/  and on-line support chats, such as those offered by MS World http://www.msworld.org/

MS can be very hard on couples’ relationships. It’s hard to find the balance between not discussing MS, or discussing nothing else but MS. Couples with MS are challenged to simultaneously change according to the demands of life with a chronic illness, while staying the same, preserving the qualities and shared values that brought you together in the first place. Counseling for couples living with MS can be very useful: http://www.nationalmssociety.org/NationalMSSociety/media/Mid-America/Stay%20Informed/MS-Connection-Summer-0529.pdf (on page two there are tips for finding a couples counselor)

David Rintell, Ed. D.
Psychologist, Partners MS Center
Brigham & Women's Hospital

Here is another answer in response to your question:
You are definitely not alone. There are many people with MS who feel emotionally drained and isolated. The way people react to chronic disease varies from person to person and also changes over the course of the illness. Often these responses, and the responses of those around you, are not particularly helpful and leave individuals more stressed and emotionally drained. 

To be more successful, and this is a process that is continual, you need to find balance and work on enhancing your innate self-efficacy. Self efficacy, as I have written previously, is the perceived belief that an action with achieve an outcome and that you are capable of persisting with this action to achieve this outcome. To quote directly from my previous blog there are several steps required to enhance your self efficacy:

1. Build on your past successes: These successes did not come easily and would never have occur unless you learned to overcome obstacles and failures.  Use this knowledge to help you now.
2. Seek out positive role models: Find someone who has had to overcome similar obstacles. This is the reason why support groups and blogs are so popular.
3. Develop a strong social support network; it is hard to quit smoking when everyone around you smokes. Seek out non-smokers if you want to be successful
4. Reduce stress reactions: To do this you must alter your tendency to negative emotional states and misinterpretation of your physical symptoms as harmful. A person who tells me exercise makes them too tired or sore is a classic example.  Do not misinterpret these symptoms as harmful or a reason to stop. Similarly do not interpret your heart racing or your anxiety over an injection as a sign that taking the medication is harmful. Use this to facilitate performance not limit activities. Do not let these physical stress reactions become debilitating and give up.

People who are healthy or experiencing chronic diseases  often require help in achieving these steps, whether that occurs through social networking groups or groups lead by health care professionals (psychologists and social workers usually).  Remember, this is a process to help you achieve better outcomes throughout your life.  Begin by talking to your doctor and consider getting a referral to a health psychologist. These individuals help you with a process called cognitive behavior therapy designed to essentially help you with the steps outlined above.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego