If you’ve just been diagnosed…

The first thing you need to accept about your condition is that it is more like a marathon than a sprint.

You cannot manage it all on your own and you will need to do things at your own pace. Subject to the limitations of your energy and concentration, learn everything you can about your condition.  You’re going to need a support team, and now is the time to think about who should be on it.  Some ideas:

  • your general practitioner
  • a specialist practitioner (neurology, rheumatology, pain management)
  • a naturopathic doctor
  • a nutritionist
  • your family
  • your friends
  • your boss or HR contact at work
  • a life coach
  • housekeeping support
  • someone to help you exercise (a friend, a trainer, a yoga teacher)
  • a neutral source of emotional support (a doctor, a member of the clergy, a professional counselor, a support group – in person or online)

The nature of your team may change from time to time as your needs change.

Obtain a notebook that you can use as a place to record your questions and concerns.  There will be days when you won’t be able to think clearly because of brainfog – if you record your questions and thoughts you will get more out of your encounters with health care practitioners who can respond to your concerns.

Respect the limitations of your energy and pain tolerance, experiment with treatments that interest you and learn how to pace yourself.