Overcoming Fears When Living With Myositis

Myositis

Those with a rare chronic illness like myositis not only live with existing fears -- they often find themselves facing new ones.

And in understanding that their illness is chronic, they often worry that these fears may follow them forever. At this meeting, the group talked about fears that have emerged since their diagnosis with myositis, as well as ways they have found helpful in overcoming them.

The symptoms of myositis can create a lot of unknowns in your life. You cannot predict how you will be feeling in a month, week, or even the next day. The fear of loss of control weighs heavy on those with myositis, as they often find it difficult to lead a spontaneous lifestyle -- they find themselves planning ahead very carefully. Additionally, their myositis often dictates the choices they make and, sometimes, those of their family and friends as well.

The group talked about how they not only feared losing control, they actually continue to face it on a regular basis. Whether it's finding a restaurant that has an accessible front door and restroom, or a job that allows for flexible hours and work from home, those with myositis often find themselves accommodating their myositis more than their own wishes. Group members said that they feel less control when deciding where to go, when to go, and whether they can go by themselves.

One group member pointed out how she enjoys museums. After her myositis diagnosis, she could not go by herself because the walking is too much. She could ride in her scooter, but she can't lift it out of the car. She prefers to go when her husband can take her, but then she is on his schedule rather than her own. Another group member said that because the subway stairs are too difficult to climb up and down, she takes the bus. Her destination is often dictated by the bus routes, and she misses making decisions on where to go whenever she wants to go.

In order to cope with a loss of control, the group talked about acceptance. Group members agreed that accepting their new lifestyle includes planning ahead and adapting to a new way of making decisions. Some group members said that they cannot really remember what it was like to live without myositis, and that they have just gotten used to making sure their needs were met. Another group member pointed out the importance of a supportive spouse, family, and friends, as they have all adapted to making decisions based on the limitations of their loved one with myositis.

Other group members said they still miss a more spontaneous lifestyle, but they feel more freedom on days when they are feeling better. The future plans you've made previously may no longer be possible, but the group agreed that you can still have future plans. They just may need some adjusting.