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Coming to terms with CMT
Having any disability can be difficult, particularly if it is a long-term condition like CMT.
You may find that at different times in your life you face different problems, or you may find that something you have been dealing with perfectly adequately for many years becomes more awkward. Remember you are not alone and that there are people who are on hand to offer you support when you need it. Apart from your friends and family, there are people with CMT who will be able to share their experiences and methods of overcoming the difficulties you may face. And of course there are a number of voluntary organisations, not to mention professional carers, on hand.
However your CMT affects you, somebody has probably dealt with that particular problem before and there is always an answer, technique or method for dealing with it, and living life to the full. It may take a bit of time to find the right solution for you, but do ask and, in the words of Winston Churchill, “never, never, never give up.”
Taking control of CMT and your life
It is your body. You are the person who best knows how your CMT affects you on a day to day basis. Ultimately, if you don’t take responsibility for it, no one else will.
Professionals, in the form of social workers and doctors for example, are there to offer their specialised advice and support on issues such as treatments, drugs and benefits, but they will only be with you for a few short hours. The rest of the time, your wellbeing, both physical and mental, is up to you.
By taking an active interest in your condition and by thinking about your general health beyond CMT, you can:
Feel more confident and in control of your life
Manage your condition and its treatment in partnership with healthcare professionals more equally
Help prevent further complications
Communicate effectively with professionals and share responsibility on treatment
Become more realistic about the impact of your disease on you and your family
Use your skills and knowledge to lead a fuller life.
If you are interested in learning about how to take a more active role in your general health and well being, as well as managing your CMT, you may find that the NHS’ Expert Patient Programme helpful.
Date updated - 21/11/2011
