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.
Most people with myositis experience limitations to their mobility, and the resulting feelings of vulnerability can be upsetting. Some find themselves relying on assistive devices, such as a cane or wheelchair, to maneuver around. Several group members talked about how they were diagnosed with myositis during a stage in life when they were supposed to be taking care of others; a number of group members are actually taking care of other family members while coping with their own disease.
The group talked about how myositis prevented them from holding a job, which contributed to their fears of not making a contribution to society. Group members said they felt guilty that taxpayers were assisting them with disability and social security benefits.
Although it can often feel uncomfortable, the group said they have friends and family members who are willing to clean their house or pick up groceries on occasion. Another group member said that a lack of mobility is the biggest fear, as it is sometimes necessary for someone to assist when in the bathroom. The fear of not being able to get up from a toilet seat and relying on someone to help was described as “embarrassing” and “demoralizing.”
The group talked about how it is sometimes difficult to ask for help, especially when they do not look sick. They worry that others are suspicious of how they are feeling. A group member shared that her brother adapted her home with assistive devices, such as grip bars, which allows her greater independence. She said that her job each day is “to remain independent one more day.” Though expensive, another member expressed her satisfaction with the purchase of a stair lift so she has greater independence in her home.
In order to cope with the fear of dependency, group members find that it is important to know themselves and their limitations. A group member said that as long as she can complete a task on her own, she makes sure that she does it. She recognizes that there may be a day when she won’t be able to accomplish certain things and will need assistance, but until then, she takes pride in her abilities - no matter how small they may seem to others.
When you are not feeling well, you may find it difficult to motivate yourself or acquire the energy to make plans or head out of the house. A diagnosis with a rare disease could leave you feeling a great deal of shame and confusion, leading you to withdraw from others. Many group members talked about how friends eventually stopped calling or inviting them to make plans. Work can often be a source of friendship and belonging, but the symptoms of myositis often prevent you from holding a full time job.
One group member talked about how she had many friends at work, and when she first stopped working, she was invited to the co-worker gatherings and celebrations. Over time, however, she began to notice that she was losing touch with many of them. Another group member said that although many friendships have withstood the diagnosis of myositis, the fears of a friend watching them crawl up and down the stairs or needing assistance in the bathroom can keep friends from visiting their home or inviting them over. Also, the fear of falling can prevent them from leaving the house.
The group discussed how they are now choosier about entering into new friendships and maintaining old ones. Group members agreed that some of their closest friends remain their childhood friends. Qualities that those with myositis look for in friends include empathy, compassion, and flexibility.
Family members may not always be the easiest to talk with about myositis, as communication styles within families can vary. For families that are uncomfortable talking about painful subjects, someone with myositis may find their feelings minimized or their concerns overlooked. In other families, obsessive worrying may be the reaction.
A group member said that friends are more helpful in coping than family members because her family does not understand what she is going through. They worry too much and she wants to remain self-reliant. She prefers to appear as healthy as she can and wants to fit in with the rest of them.
Another group member talked about her isolation from friends and neighbors. She told the group how her family used to have barbecue parties for the neighbors in their backyard before she was diagnosed. Once it became too much for her to plan and throw a party, instead of someone else taking over, the parties slowly stopped. A group member explained how attending an event with a variety of colleagues was a little intimidating at first, but eventually this person realized that they were very missed by everyone.
To cope with the fear of isolation or abandonment, you first need to recognize the signs. Isolation can occur slowly over time as you and your previous friends begin to withdraw from each other, and it can be awhile before you even realize you are lonely. A reunion with old friends can help you reclaim a part of your former self and to experience the openness of others, rather than judgment. Though finding the energy to continue hobbies, foster relationships with others, and remain active may be difficult, they are important activities that allow you to feel healthier and to stay positive.
The medications used to treat myositis can have side effects that result in a change in appearance, thus impacting your confidence. Group members talked about how they have gained weight and had difficulty growing hair since taking steroids. Another member said that she experienced an allergic reaction to a cream used for her dermatomyositis. She had black dots on her face.
Other group members pointed out how their assistive devices change their appearance and that some people are afraid to look them in the eye. Another group member said that the swelling in her face made her very self-conscious -- she described it as her “moon face.” The group agreed that they often experience invasive questions about what is causing the symptoms.
Visible symptoms can attract unwanted attention. A group member shared stories about children staring at her, and she asked them if they liked her makeup. After lowering the dosage of Prednisone, a group member said she received the comment, “You finally look human again.” Although some people allow comments like this to roll off their backs, others really take the comments to heart.
Several group members all felt that their self-esteem had been tested with the visible side effects of their medications and it is distressing for them to see themselves looking so different than before. The alternative experience expressed by members are when they hear the phrases, “But you don’t look sick,” or “You look so good.”
Although you may not wish to look sick, it can often be difficult to explain to others that although myositis may not always be visible, it doesn’t necessarily mean you feel 100% or that the myositis is gone.
Coping with the fear of change in appearance may require self-esteem boosts, and it could be helpful to spend time, for example, on activities that show your talent or with people who appreciate your sense of humor. The group agreed that responding to others about the hurtful comments can feel gratifying.
We also discussed how some people may not realize that their comments are insensitive. One person said that they believe there has been an erosion of civility and politeness in society as others think they can point, stare, or make comments to complete strangers about their appearance. Another group member talked about a change in priorities since their diagnosis of myositis and that, to this person, maintaining a good appearance is second to feeling good.
Since myositis is a rare disease, many people have never heard of it and are afraid of what it really means. It can be frustrating when doctors and nurses do not even know what myositis means and how to recognize it. Having a disease that is considered rare can feel scary, but it can also be frightening for those who care about you. It can even be scary even for mere acquaintances.
The group talked about the different reactions they get to the words “myositis,” “disease,” “rheumatic,” and “autoimmune.” One group member said that instead of saying “myositis,” she tells others that she has a muscle illness or muscle disease so that they know that myositis is related to the muscles. Other group members agreed that it can be best to tell others what they have using simple language. Another group member said that explaining myositis as “something like arthritis but affecting the muscles,” can be effective. One group member talked about how she was shunned at church because other parish members thought that autoimmune disease meant HIV/AIDS. She believes they may have felt sorry for her and were worried that they could catch something from her.
Another group member shared a story about when she parked in a reserved spot for the disabled and an elderly customer in the parking lot became upset with her. It seemed that this person did not believe that the group member actually needed the reserved spot because she did not look sick. The group member told the woman, “How very lucky for you that in your older age you’re still not disabled.”
It can feel empowering to be able to address the stares, disapproval, or distrust of others with a witty and direct statement. Group members talked about how they are grateful that their disease does not always have visible symptoms, but that it can also cause others to doubt the seriousness of the symptoms. Group members said that when someone tells them they look good, they often take it to mean, “Why aren’t you able to work?” It is hard to determine whether the other person is thinking this or the person with myositis is insecure in worrying about what others think. Either way, the group said that invisible disabilities are difficult to explain to others.
Promoting the knowledge of myositis and invisible disabilities among family, friends, and the community can be helpful in coping with the fear of stigma. The group felt strongly that it was important for the media to pay more attention to myositis. The group also agreed that standing up for themselves gave them more power in coping with their myositis, which allowed them to feel more comfortable with their rights and to take advantage of the services offered for disabled individuals.
The group is familiar with The Myositis Association and felt that the annual conference was an important tool in spreading the word about the condition. They also felt that when September 21st was designated as National Myositis Awareness Day by the U.S. House of Representatives in 2006, it was a great step in promoting the knowledge of myositis.
For those with myositis, facing fears is often an everyday struggle and finding ways to overcome these fears is a necessary endeavor. These fears are important for both patients and caretakers to recognize as each of them plays an essential role in the health care team. Fears may not go away, but they can be addressed more appropriately when you understand how they are affecting you.
Myositis Support Program at HSS
Learn more about the Myositis Support Program, a free support and education group held monthly at Hospital for Special Surgery.
Angela Hunter, LMSW
Myositis Support Group Coordinator