For those living with myositis, the temptation to focus on their debilitating symptoms -- including fatigue, stress, muscle weakness, and swallowing difficulties -- is hard to resist. However, constantly dwelling on the negative aspects of myositis can be harmful to their emotional well-being while preventing them from improving their ability to cope with their symptoms. Maintaining a positive outlook when experiencing all these challenges can be difficult; however, opportunities that bring laughter, joy, acceptance, and hope are valuable assets to the treatment plan prescribed by your physician.
The group talked about how having realistic expectations of their illness was helpful in coping with the flares, feelings of depression, or bouts of fatigue that often accompany a diagnosis of myositis. One group member said that by “expecting bumps along the way,” she can focus on the bumps as temporary setbacks that will eventually cease rather than getting upset each time she experiences a flare. She acknowledged that it is never easy to go through a flare - she really dreads them - but the knowledge and confidence that she will get through it can be helpful.
The group also mentioned that paying attention to the way you feel and recording your symptoms can help you predict when a flare may emerge. By spotting the symptoms that indicate when a flare is coming, you may want to avoid activities that require physical exertion or to limit strenuous activities. It might also be helpful to build in a few days of rest to your schedule after completing an exhausting activity. By anticipating a period of rest, you may look forward to the rest rather than feeling frustrated and angry about feeling wiped out.
The group talked about the benefits of being around supportive people. One group member said that she finds it very inspiring to attend the Myositis Support Group meetings at HSS. She enjoys being around others who understand what it is really like to live with myositis, including the fatigue, the many doctor’s appointments, the loss of mobility, the frustration at not being able to work, and the flares. She looks forward to attending the meetings and catching up with the other group members.
The group agreed that spending time with others with myositis helps them to know that they are not alone. When a group member reports that they are feeling better, it can feel like an accomplishment for everyone. After a group meeting, one group member said that sometimes she experiences feelings of negativity on her way home, as she knows she is entering the world where no one else understands. The group also said that it can be helpful to just spend time with someone who has a challenging illness, especially if that illness has invisible symptoms like myositis. Surrounding yourself with compassionate individuals allows you to feel like you are understood and cared about.
The group discussed the positive benefits of learning to assert your needs. Learning effective ways of telling others what you need or how you feel can help raise self-esteem and enhance relationships with friends and family by increasing trust. The group agreed that sometimes they just want to be alone so they can relax or focus on their hobbies. They wish others would understand that it does not mean they are depressed or withdrawing.
Rather than becoming frustrated when others express concerns about emotional health, group members agreed that it is up to them to accurately describe their need for alone time to their friends and family. For those who are shy or are more comfortable attending to the needs of others rather than to their own needs, it can begin to feel like they don’t count. It can feel very lonely and disheartening, and it can also strain relationships with others. The group said that it is sometimes difficult to tell people what they really want or how they’re really feeling. They do not want others to feel they are a burden or to think they are always complaining about their myositis.
Despite their hesitations, the group members said that honesty is productive in maintaining good relationships. It’s important to let others know exactly what you need or want rather than giving subtle messages. Telling yourself that you do not matter is counterproductive to enhancing both your relationship and your health.
It is easy for a person to begin to define themselves by their myositis because it has such a large impact on their life. Myositis requires a lot of time, including doctor visits, physical therapy appointments, prescription filling, taking pills, IVIG treatments, reading articles about myositis, and searching for adaptive devices. It can also force you to make a number of changes in your life to cope with the emerging symptoms. Some people can no longer perform their job responsibilities and have to quit. The group said that they found out who their true friends were and experienced changes to their relationships after their diagnosis of myositis.
Yet, in spite of having myositis, every individual is unique and may have a special talent or a sense of humor. They may be good at trivia or telling jokes. The group discussed the importance of remembering the things that make them unique that are not related to myositis.
It can be scary to let others know when you’ve been diagnosed with myositis; group members shared how they worried what others thought of them. One group member said she still hasn’t told everyone about her myositis, and flexibility in her work allows her to continue working. Others have been coping with myositis for longer and have told most people in their support network. The group discussed how focusing on qualities other than myositis will help others to focus on the same qualities in order to see you as a person first.
A group member said that she has realized that sometimes she puts her life into two stages: “before myositis” and “after myositis.” She said that it’s as if she remembers her life before myositis was perfect and she “wants her life back.” The group talked about how a perfect life doesn’t really exist and that some people faced difficult times before they were diagnosed with myositis. The group also discussed how it’s easy to forget that life is full of ups and downs, regardless if you have myositis.
Since myositis is a rare disease, people can feel like they are alone in their disease and that their diagnosis is really unfair. By expanding one’s perspective, one would find that other people are coping with a number of other illnesses or other hardships in life. Someone else may have a more severe problem to face. Although it may not help you to feel better, it can be good to think about the things that are going well in your life and to find ways to acknowledge them that will help enhance positive thinking.
Books, videos, websites, friends and family can all offer inspirational advice. By surrounding themselves with these positive influences, people with myositis can remain positive when coping with their disease. Myositis is often unpredictable and you can experience good and bad days; however, by maintaining a positive outlook, you may be able to endure the bad days with added strength and hold onto the hope that a better day will arrive soon.
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, Myositis Support Group Coordinator
Angela Hunter, LMSW
Myositis Support Group Coordinator