Living with myositis: What you can do to help yourself Part 1

Living with chronic illness strategies

Living with myositis, or any chronic illness,  requires certain adjustments. It is important to make healthy choices for ourself - no one else will, no one else can. It is up to us to keep our symptoms under control and take control of our own health with the advice of professional health providers.
Managing myositis starts with proper treatment, including medication and therapy. But there is more we can do to help ourselves each day. These daily decisions may influence the course of our illness: whether our symptoms get worse; whether we stay on an even keel or experience a flare.

Things we need:

  • Education. Learning about our illness. This allows us to make informed decisions about all aspects of  our life and treatment.
  • Personal Responsibility. Taking action including the basics of taking medication as prescribed and keeping appointments with doctors and the sometimes more difficult tasks such as asking for help from others when we  need it.
  • Perspective. Having a wider perspective on the disease is important: painful times won't last forever and it may be difficult to believe things will get better again unless we have this wider perspective. Also realising there are people worse off than ourselves really puts our disease in perspective.
  • Self-Advocacy. This means being an effective advocate for yourself so you can get the services and treatment you need.
  • Support. Support from others is essential to feeling less lonely and enhancing the quality of your life. Having someone to talk to who understands is important and this could be through a forum such as Daily Strength.
  • Hope. Believing that you can cope is essential. With good symptom management, and pacing and understanding your limitations, it is possible to experience long periods of feeling okay, even good. 


  1. I think you need others to be educated too - I have never heard of it. Thank you for linking up with the Healthhop

    1. Thanks for mentioning that - you are right not many people have heard of myositis

  2. I Have this or IBM Inclusion Body Myositis. had lots of tests muscle biopsy etc condition drives me nuts and the PAIN Arghh

  3. Hi Francis, good to "meet" you, sorry about the pain and myositis. I have been reading your blog with much interest

  4. Inclusion body myositis treatment on time is important for your muscles. Natural Herbs Clinic paid own duty in the Inclusion Body Myositis Natural Treatment technique with herbal extract without any side effect and extended run safe.

  5. I used to be a social worker and suddenly ended up becoming a client....a very confusing and scary 18 months followed.

    1. Hi Paul, I'm sorry to hear that. (I presume you are diagnosed with myositis?) How are you going now and please tell us why you found it so scary?


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