Adapted from an open discussion by members of the Myositis Support Group of Hospital for Special Surgery, July 13, 2005
- Visible Symptoms and Disabilities
- Invisible Symptoms and Disabilities
Myositis can be diagnosed in individuals from a range of age groups, both genders, and all races and ethnic backgrounds, and it is a disease that affects each individual in a unique way. Yet, many of our support group members have experienced common symptoms and disabilities resulting from their myositis. Our group shared the impact of these symptoms and disabilities that may be visible or invisible, along with their suggestions for coping, in an open discussion facilitated by Angela Hunter, Myositis Support Group Coordinator.
VISIBLE Symptoms and Disabilities
- Assistive Devices
The group talked about how using assistive devices, such as canes, walkers, and wheelchairs are visible to the outside world and highlight their physical limitations to others. Although these devices are helpful and allow greater freedom, using them can also have some downsides.
It can be frustrating to feel dependent on an assistive device. Using a cane makes one group member feel disabled, and she prefers not to use it. The reaction from others can also be distressing. The group discussed how people react, such as by staring or avoiding eye contact, when they are using an assistive device. A group member pointed out that with myositis; she has good days and bad days. On bad days, she may need to use a cane, while on good days she doesn’t need it. She worries that other people may perceive her as a “fake”. Another group member talked about how she sometimes leaves her cane in the corner when at a social gathering, and others look at her suspiciously. A group member also shared her experience of someone challenging her by saying, “You didn’t have that cane last time.” We also talked about accidentally leaving the cane somewhere when you don’t need it all the time and don’t always remember it. Group members talked about how it can be embarrassing to retrieve the cane later.
The group also discussed how using an assistive device can sometimes make them feel depressed. It points out their disabilities to others as well as themselves. Another group member said that using a scooter means freedom, which is a positive thing, but the reaction of others can make them feel lousy. People are always hurrying them along or becoming annoyed when the wheelchair is in the way.
The group discussed the value of talking to others about the symptoms of myositis. It can be helpful to share with those who are important to you, such as family and friends, about how myositis can cause flares and a person to have up and down days. Once they understand why you might have a cane one day and not need it on another day, they may not question it. One key saying is, “Don’t talk about us, talk with us.”
- Muscular Deformities
Several group members talked about the muscular deformities that have resulted from their myositis. Muscular deformities can create obstacles to mobility and cause a person to be self-conscious about their changing bodies.
One example mentioned was that a person form our group had knees that buckled backwards. It was very uncomfortable for the group member and not a common sight for many people, so it was a disability that drew unwanted attention from others. Group members shared how their feet, hands, and arms look differently since their onset of myositis, especially since they can’t move as easily. It can be difficult to hold onto items when their hands do not grip properly. Another person said she finds it difficult to buy shoes that fit and that her feet are often sore.
For those with muscular deformities due to myositis, group members talked about the benefits of physical therapy. They also talked about how drawing attention away from the deformity is helpful, and gave the example of wearing different kinds of clothing.
- Weight Gain
Weight gain is a common result of the medications group members take for their myositis. Corticosteroids such as prednisone are the most commonly prescribed treatments, and two of the potential side effects are an increase in appetite and weight gain.
Many group members shared how they had gained weight after taking prednisone. One person said she looks quite different after gaining weight and that it took time to adjust to her new look. The group also talked about the surprised look from acquaintances that haven’t seen them for awhile. The group talked about their self-esteem and how those who are overweight are often discriminated against. Also, a large increase in weight has resulted in stretch marks for some group members. Another member shared that the skin on her arms is very tight and sometimes slightly painful.
To lose weight, the group talked about speaking with their doctors about exercising. They also talked about eating a well-balanced diet low in carbohydrates and fat to prevent excessive weight gain. Eating better and exercising may be helpful, but it’s not easy to make changes and to create new habits.
A visible symptom of dermatomyositis is a rash that may develop on the face, knuckles, and other parts of the body. The reddish rash can occur on the eyelids, cheeks, bridge of the nose, back or upper chest, elbows, knees, and knuckles.
One member said that little kids have looked at her face with curiosity when she isn’t wearing her makeup. Although it might be understandable that a child wants to look at someone who has a difference, it can feel insulting if it happens frequently. It can be even more upsetting when the person staring is someone in your peer group. Another member said people often misperceive the rash as contagious and finds it hurtful when others avoid contact or move away from them. The group discussed how a person’s self-esteem is impacted because of the rash, especially when the rash is obvious on the face.
The group talked about how children are naturally curious and they don’t always understand that staring or pointing is impolite. A group member shared that she has found a type of makeup that works well to cover the rash. She suggested that people experiment with different types of makeup. Also, the group said that sometimes mentioning the cause of the rash can put others at ease when they aren’t sure if they should ask or not.
INVISIBLE Symptoms and Disabilities
One of the most common symptoms of myositis is weakness. Many group members experienced weakness before diagnosis with myositis. The group shared how it can be difficult to determine whether the weakness is from myositis or from aging.
Because weakness is invisible, it can be difficult for others to understand how a person is really feeling and what their energy level is like on the inside. Weakness affects most aspects of daily living, from getting up in the morning to putting on pajamas before bedtime. The group talked about their difficulty in rising from a chair, climbing steps, or even lifting their arms. Some days a person may be very weak while on others days, they have more energy. It can be frustrating to ask for help from others on occasion because they don’t always understand the concept of weakness.
Group members also talked about how weakness causes them to fall or trip, which can be both embarrassing and scary. Falling can make a person feel vulnerable, especially when strangers have to help them get up. Others may think they are clumsy or distracted. The group also talked about how others stare when someone helps to lift them out of a chair in a restaurant or at the movie theater. This type of help tends to cause more attention when you don’t have visible disabilities because people are curious and wonder why you need someone’s assistance.
The group pointed out how important it is for individuals with myositis to consider their energy level on a daily basis and to recognize their limitations. Since the level of weakness may be high or low on different days, it may be helpful to find a way to assess your energy level each morning. It could be helpful to keep a journal that records warning signs of weakness. When planning to leave the house, if a person is experiencing some weakness, they may want to bring a cane just in case. Also, several members talked about the devices they have purchased that allow them to pick up things from afar or to rise out of a chair. These items can make daily living a little easier and allow a person to focus on other things.
Another common invisible symptom of myositis is fatigue. Whether fatigue is from myositis or from medications, many group members find themselves tired easily and often.
A person with myositis can get very fatigued after prolonged standing or walking. Group members talked about how it is hard for them to wait for the bus because they can’t stand for too long. Then the group talked about how others push them to get on the bus. And once on the bus, they really need a seat, but since fatigue is invisible, other people don’t readily let them sit down. Since group members have ups and downs with their energy level, they aren’t always sure how they will be feeling on the day they have plans with a friend, so it can feel awful when they need to cancel. On the other hand, the group talked about when they push themselves too far and then they end up falling asleep in public. Another member mentioned that she fell asleep at a friend’s house and it made her feel uncomfortable. She was also worried that her friend thought she was bored.
The group talked about ways they could try to keep their energy up, whether it’s from stress reduction or changing their diet. The group also addressed ways they could avoid wasting energy, such as finding efficient ways to complete chores. We also talked about how helping others understand that fatigue is a symptom of myositis will go a long way to explain that canceling plans or falling asleep during a social gathering is not due to boredom.
- Difficulty swallowing
Myositis can affect the muscles in the front of the neck and throat, making it hard to speak or swallow. Several group members have experienced difficulty swallowing and find that because it is not visible, most people do not even think about how hard this would be for a person.
The group talked about how they don’t always know when they will have difficulty eating. The unpredictability can be tough because a person may be in public or with friends. Sometimes the difficulty means they eat slowly, while at other times, they may feel like they are choking. All these experiences can make them feel self-conscious and cause great frustration.
One person said that she has a mini-vibrator that she has held to her throat to help swallow. We talked about the types of foods that might be easier to eat and to choose particular foods when eating in public. Other members mentioned drinking nutrition shakes.
In some ways, myositis is visible and in other ways it isn’t. From our discussion, we noticed the advantages and disadvantages of having disabilities that are visible vs. invisible. From the few areas we focused on during this meeting, one point that was raised many times throughout the discussion was the group members’ concern about how others perceive them. It seems that sharing details about your experience with the important people in your life might be helpful and relieve some of the anxiety about what they are thinking.
About the 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 prepared by Angela Hunter, LMSW, Myositis Support Group Coordinator
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