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.
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.
Next, the group talked about the things they missed most. A group member said that she almost can’t remember what it felt like not to have myositis, but she remembers all the things she used to do. She misses working, dancing, driving, traveling. A group member said that she missed “contributing”.
One group member said that when first diagnosed with myositis, she kept asking the question, “When can I get back to work?” It just didn’t seem possible that she would have to stop working because of a diagnosis with a rare illness that she had never heard of before. Another group member said that she missed small pleasures like getting her nails done. She said that all nail salons have chairs with wheels and since she has some difficulty with balance, she fears that she may fall.
Other members talked about how they missed driving. Previously, one member said they spent a lot of time in the car. Now, it’s difficult to go anywhere and it takes a long time to plan even a simple trip by car. This person has the desire to be spontaneous but it just isn’t possible. They have to make sure to bring any assistive devices or call ahead to make sure a restroom is accessible. Quite often, the perception of what an “accessible bathroom” is can be different, especially by those who have no experience with individuals with disabilities.
The group talked about the fears of visiting friends and family and sometimes just being out in public, such as the fear of falling or the fear of embarrassment. Group members then talked about how sometimes you need to try something to see if it will work. A group member told the story of how her friend in a wheelchair came to visit one time and they have to accommodate her. However, the joy of spending time with their friend overshadowed any challenges they faced in preparing for this guest.
A group member talked about how her priorities shifted after she learned she had myositis. She said that in the past, her focus was more on her job, dating, socializing with friends, and having children. After myositis, her focus has been more on managing her illness, completing daily tasks, and finding ways to continue her interests and hobbies.
Another group member talked about how their past was filled with physical activities. After myositis, this same person says the fatigue is so great that they often need to take a nap during the day. At times, several naps are necessary. Other group members agreed that they feel very tired and have had to learn how to conserve energy when completing tasks.
The members talked about how it took time to admit that they didn’t always have the energy to do the things they wanted to do during the day. Now, they realize that it takes more planning ahead and in order to do the things they want to do, they may have to take it easy the day before, bring along assistive devices, or tell others about their physical needs before visiting.
During a discussion about caring for pets, the group talked about how myositis affects their freedom to make decisions. For example, one group member said that although she might like a pet, she feels that it would be too difficult. Another group member said that living with a pet can benefit a person’s health and it may outweigh some of the difficulty. Some group members had pets and found they were enjoyable and not a burden.
The group talked about how it seems that myositis has taken away many choices, as they have to accommodate it when deciding what to wear, when to eat, and where/how to vacation (or whether to travel at all). The group recognized that they still have the freedom to make many other choices, such as what book to read or TV show to watch, but that myositis definitely impacts their decisions and the decisions of their loved ones.
At the end of the meeting, group members addressed the question: What have you learned about yourself since your diagnosis with myositis?
A group member responded that they learned their own strength. They have had to overcome many obstacles, flares, and changes in lifestyle. Another group member said that they have learned to appreciate the little things in life. They find that they appreciate a day when they have a bit more energy or hearing the doctor tell them their CPK level was lower than it had been previously.
Another member said that she has learned to be more empathetic toward others. She belongs to a community garden and although her plot had the best sun, she traded plots with another person because that person had mobility issues that made it difficult for her to get to her original spot. Another group member said that she has assisted older women with hailing a cab even though it was a difficult task for herself.
The group members continue to find ways to help others, even if they are different from how they helped others before myositis. Another member learned the art of appreciation. She said that she appreciates what she can do rather than focusing so much on what she can’t do. She also appreciates the help of others. She knows that she will help others when she can and she can accept help from others when she needs it.
Several group members talked about how helpful their partners are in tending to their needs and supporting them in coping with myositis. Many group members agreed that one of the biggest things they learned was who their true friends were once they were diagnosed. They learned that some friends genuinely care about they are doing while other friends just want things to continue to be the same as before.
Individuals with myositis often need to adapt to a new lifestyle due to their symptoms. They learn a lot about themselves and those around them. The group members shared many different ways their lives have changed since their diagnosis. Although they face many challenges, those with myositis find ways to cope with the changes and have realized their own inner strength and the support of those who care for them.
Myositis Support Group at HSS
Learn more about the Myositis Support Group, a free support and education group held monthly at Hospital for Special Surgery.
Summary by Angela Hunter, LMSW
Angela Hunter, LMSW
Myositis Support Group Coordinator