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Myositis As A Life-Changing Event

Armen Hareyan's picture

For those with myositis, we often hear that receiving the diagnosis was a life-changing experience for them and for their loved ones.

In this discussion, group members talked about their lives before and after myositis, including what they miss most, the greatest changes they have faced, what has stayed the same, how they would describe themselves, and what they have learned most about themselves.

The discussion began with a group member describing how the symptoms of myositis appeared gradually. "The symptoms sneak up on you," she said. Her lifestyle slowly began to change as she began to notice that some tasks were more and more difficult to complete, such as getting out of bed or carrying heavy objects. When she received the diagnosis of myositis, it was a rare disease and she really wasn't sure what the long term effects would be for her. When she thinks back to a time when she had greater strength and mobility, she wonders where it went and whether she will ever get it back.

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A group member said that if ten years ago someone asked the question, "Could you see yourself not driving, not working, or having difficulty getting out of a chair in your future?" it would have been hard to imagine. Now that it has happened to her, she realizes that she has been able to adapt to this lifestyle, though on some days it is harder for her than on other days.

Another group member said that the diagnosis of myositis came at the high point in her life, thus affecting her self-esteem. She had moved to New York City to pursue her dream career. When she was told that she would have to give up her career, it was devastating. She had been very proud of her talents and career outlook. After myositis, when others ask her, "What do you do?" she finds it upsetting to tell them she doesn't work because she's disabled. She would love to contribute in various ways, such as through volunteering, but it has proved difficult. When she explored volunteer opportunities with a flexible schedule, she found that it could jeopardize the disability benefits she receives.

The group discussed how difficult it is to explain to others and government systems that they could volunteer or work on good days, but that their symptoms are often unpredictable, so there might be days when they aren't able to work.

Other group members shared how they also missed being able to work. Many people define themselves by their education or work, and the group members talked about how not working makes them feel like they have lost some of their identity.