Living with myositis

People experience myositis differently but there are shared ways to cope.

Living with myositis

Everyone experiences myositis differently. What some may find challenging, others may not. And while some react well to treatment, others may have additional health complications.

This means living with myositis can sometimes feel like a unique experience. However, there are many shared experiences between people not just with myositis, but other rare diseases too. It’s the coping mechanisms that vary, depending on what works for you.

This is not to pretend that a myositis diagnosis is not life changing. Living with myositis, you cannot predict how you will feel in a month, week or even the next day, and therefore life will surely be different because of that.

However, a different life is not the same as one without fulfilment. Many people with myositis live exciting and gratifying lives. It might not always be easy and it is a continuous journey – but you can find ways to live with myositis.

Myositis members dance at a Myositis UK event

Overcoming fear

Those with a rare disease like myositis may find themselves facing a range of new fears brought on by their condition. This includes the fear of loss of control, dependency, isolation, change in appearance and stigma.

These are all normal fears to have and are shared by many people with myositis. The key is acceptance and a willingness to adapt. This is easier said than done when facing these fears is often an everyday struggle, but there are techniques to help.

Talking to others with myositis or a rare disease has been found to be useful as sharing stories can provide motivation, put things into perspective, remove isolation and offer comfort. Boosting your self-esteem by doing activities that show your talents or personality can also provide some of the groundwork to help overcome your fears.

Your fears may not go away entirely, but they can be addressed when you understand how they are affecting you. For more information on fear and myositis, we recommend reading this study in the HSS.

Learning more about myositis

An improved understanding of myositis can help some people feel better about their condition. Here are some places to start if you need help understanding myositis.

Treatment and therapies

Myositis varies from person to person meaning some trial and error may be needed to settle on the best treatment plan. This may involve a combination of medication, exercise, diet and other therapies.

Medication

Polymyositis, dermatomyositis and juvenile dermatomyositis usually respond well to a combination of steroids and immunosuppressive medication such as disease-modifying anti-rheumatic drugs (DMARDs). Regrettably there is no proven treatment for inclusion body myositis but other options are available.

More about medication

Exercise

Exercise is an important part of living with myositis for most people as aerobic exercise helps to restore muscle strength and improve stamina. However, it should only be done when your myositis is not active, and in line with the advice of our doctor or physiotherapist.

Children with juvenile dermatomyositis will need more vigorous physiotherapy to prevent flexion contracture, a condition where joints, especially the knees, become permanently bent due to calcium deposits in the muscles.

Exercise is particularly significant for those with inclusion body myositis too as this type of myositis does not respond to medication.

More about exercise

Other therapies

Other therapies such as speech therapy and mind and body practices can be integrated into treatment plans for those with myositis. It is important to view these as complementary to medication and exercise, rather than in replace of more traditional approaches.

Please discuss any complimentary or non-traditional approaches with your doctor so they can continue to monitor your symptoms and recovery with a full picture.

More about other therapies

Connecting with others

Talking to others with myositis or a rare disease can provide motivation, put things into perspective, remove isolation and offer comfort. Here are some ways to connect with others.

  • Become a member. You can sign up to become a member of Myositis UK for free (if UK-based) using our online form, giving you access to more information and opportunities.
  • Join our Facebook group. We also have a closed Facebook group you can request to join to connect with others in a similar position to you.
  • Discover our community zone. Not on Facebook? We also have a community zone where you can connect with others, hosted on a platform by Health United.
  • Attend an event. We hold annual conferences and regular meet ups for members which many find useful for finding out about the latest research while connecting with others.

Sharing your experience

Some people find talking about their experience and sharing it with others a useful way of living with myositis. You might like to do this through the closed Facebook group, our Community Zone, or face-to-face at a meet up.

If you’re comfortable sharing your story online with a more public audience, we are looking for stories to publish on our blog. Please contact us.

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