Coping with Stress When Living with Myositis

Adapted from an open discussion by members of the Myositis Support Group of Hospital for Special Surgery

Angela Hunter, LMSW
Myositis Support Group Coordinator

Everyone experiences stress, but for those living with rheumatic conditions like myositis, the symptoms of their illness often add an extra layer of complexity to it. For this reason, it may be helpful for those with myositis to enhance or develop coping skills in order to ease the impact of stress on their everyday lives.

The following issues and solutions are summarized from an in-depth and frank discussion by our support group members.

Medical Appointments

Managing a condition like myositis often requires attending an endless number of doctor appointments by a number of different medical providers. Group members discussed going for physical therapy and IVIG treatments and visiting their rheumatologist, dermatologist, and/or neurologist. These appointments are often scheduled on a regular basis, so you may be going to an appointment related to your myositis every week, or even several times each week. One group member pointed out that appointments related to myositis are in addition to any other regular appointments you should have to monitor your health, such as a mammogram, skin check, or gynecological exam. 

Not only are there many appointments filling up a person's schedule, it can be stressful to figure out transportation to these appointments. This is especially true when you need to be accompanied when traveling, since the schedules of two people need to be consulted. Another way appointments can be stressful is when the doctor is backed up with appointments and you have to wait longer than expected. If you have other plans during the day, it can be frustrating to be delayed because an appointment ran late.

Coordinating medical appointments is additionally frustrating when one is experiencing fatigue, a common symptom related to myositis. On the day of an appointment, just getting out of bed and preparing for the day is more complicated when you are fatigued. Also, when it takes longer to get ready for the day, you might find yourself running late. The worry of missing an appointment, the guilt associated with making the doctor wait, or the frustration at oneself for not planning more time can cause great stress and anxiety.

Depending on the nature of the doctor visit, it can be stressful to wait for the doctor to share important news. If you are waiting for the results of a test or if a doctor is considering a new treatment approach, you may be anxious about what you will learn and what it means for you. If you have tried numerous medications, it can be frustrating to see the doctor time after time and learn that a treatment isn't working. Or, if you are experiencing side effects from a medication, it could be upsetting if the doctor insists that you come in right away.

If an appointment is going to result in learning your CPK count, you may feel anxious, since many people with myositis focus on their CPK count as a way to measure any improvement or regression in their health. Patients often worry if their CPK is higher than the previous month's reading or feel relief when they hear it has decreased. As the CPK count rises, group members reported a rise in anxiety, as they fear that it might be an indication that a flare is coming. Even though many people say that it's better to concentrate on how you're feeling and not on the number, it's hard to tune it out when the doctor says it has changed. One group member shared how her number is always fluctuating and she doesn't even remember what the normal range is anymore.

Suggestions: One group member said that she always schedules her doctor's appointment as the first one of the day so that the doctor isn't backed up. Another member reminded the group to inquire about Saturday appointments if you need someone who works during the week to accompany you. However, another group member said to be careful when a doctor has two offices. Though the doctor's office she usually visits is accessible, the office that has Saturday appointments has a number of steps, and she even had to cancel an appointment once because she realized she couldn't climb the stairs after she arrived at the new office. One group member that sees a doctor at HSS schedules appointments on the same day as the Myositis Support Group so that it only takes one trip to attend both.

To ease the anxiety of monitoring one's CPK count, one group member suggested writing down the CPK level in a journal and then record how you are feeling next to it. It will help you track whether or not the level is a good indication of feelings like fatigue or pain. Another group member told the group to ask their doctor to write the CPK level into the file and to discuss it with them only when necessary. If you need to know what your CPK level is, then try not to obsess about the number. Instead, you might want to concentrate with your medical doctor on ways to lower it.  

Social Gatherings

The impact of myositis can complicate one's ability to participate in social gatherings for special occasions, holidays, or work events. For instance, using a wheelchair or a cane to move around can render a person immobile at a crowded party. Not only is it difficult to maneuver through the crowd, it can be difficult to participate in discussions with other guests when you are stuck in a corner or if everyone else is standing above your wheelchair. 

Another difficulty of social gatherings is that they are often held in unfamiliar locations. When friends and family invite you to dinner, to a graduation party, or to a wedding, it can cause you to begin thinking of many concerns related to the accessibility of the location and of the bathroom. People using assistive devices such as a wheelchair or a cane need to be sure that hey can maneuver around. They also need to find out if there is a working elevator if there are too many steps. Some individuals make the decision to decline the invitation rather than deal with the stress of figuring out whether or not they can comfortably attend the gathering.

Entertaining others in one's home takes a lot of time and energy, and several group members shared feelings of regret that they are no longer able to host parties or family gatherings. One group member said she always enjoyed cooking for others by hosting a dinner party. Now, she doesn't have the energy to get the house ready, prepare the food, and then clean up afterwards. Taking the garbage out is also a tough chore for someone experiencing muscle weakness. The group discussed their feelings of guilt and disappointment to always be on the receiving end of invitations.  

Suggestions: The group discussed how they have to make a greater effort to participate in social gatherings. They may schedule naps on the day of the party or spend extra time resting the day before the gathering. They also prepare themselves for feeling "wiped out" the day following a social outing and try not to schedule any activities.

For those who really want to invite others to their home but do not have the energy to entertain, a potluck could be a fun way to socialize. Also, by using paper plates and plastic utensils, a person doesn't need to do dishes. Most guests are willing to help out, and they would be happy to help take out the garbage or help with some light cleaning before leaving. One group member said that she has a shopping cart that she uses to carry out the garbage. Dinner parties may not be the same as they were before you had myositis, but they can still be fun.

To avoid the disappointment of declining invitations to socialize, you may want to help your friends learn what types of accommodations are needed in order for them to attend. If you have Internet access, many web sites have lists of locations in the New York metro area that are accessible for people with disabilities, such as restaurants and movie theaters. It may be a good idea to write down the places that accommodate any limitations you may have so that you have a ready-made list of suggestions when making plans.

Riding Public Transportation

The buses and subways often seem so convenient, but when muscles are fatigued and you have limitations to your mobility, these transportation options are not always friendly. The group said that subways always mean lots of stairs. One group member said that she always feels bad for holding up the line at the stairs because it takes her longer to climb them. Another group member often lets buses go by if all the seats up front are taken. After letting two buses pass, the member often decides to walk instead. It can be uncomfortable to ask people to move, especially when the riders are trying to avoid eye contact and your symptoms are invisible to them. For those using wheelchairs, it can cause discomfort when the bus driver has to stop the bus and lower the lift, especially during busy times. A group member said that people often say, "Can't you take another bus? We're trying to get to work on time." This is especially hurtful when it has already taken a great deal of effort to get out of bed and get ready for the day.

Another member shared her disappointment with the group about being unable to attend a funeral because the other people she was planning to go with were taking public transportation. Missing out on special events and responsibilities can be distressing, especially when they are events that only occur once.

The fear of falling can also make traveling much more stressful. The group talked about how they have fallen in a variety of different places and how they have to worry about the possibility of not being able to get up.

Suggestions: Group members who use Access-a-Ride said that it is somewhat comforting to them because they don't have to worry about broken elevators in the subway or jamming into crowded subway cars or buses during rush hour. Though it can be frustrating to deal with scheduling pick ups and drop offs, it tends to be a better option than the subways or canceling plans. Another group member addressed the issue of asking people to give up their seat on the bus. The group member encouraged the group to tell the driver that they need a seat. It's the driver's responsibility to ask riders to move if they do not have a medical reason for sitting.

Also, a group member suggested that members learn their rights under the Americans with Disabilities Act (ADA). The bus is required to lower the lift if necessary. It can be helpful to think of responses to rude riders that can address their comments while also informing them about conditions like myositis. Also, you can only focus on your own mood and the way you treat other people, so feeling good about yourself may make it easier to overcome rude comments from others.

You can also find other ways to show their presence at events for family and friends, such as by sending flowers, writing a card, or making a phone call before and after the event. Remaining connected to others allows individuals to both give and get support.

To help deal with the anxiety of falling, one group member said she carries her cane. Even though she doesn't always need it, the can give her support if necessary and eases her worry about being bumped by someone on the subway or bus. One group member said that she finds it helpful to have separate walkers for indoor and outdoor use. The group also talked about having several sets of the same assistive devices, such as high chairs and arm extenders, so that they are available no matter where in the home a person is at any given time.

Taking Medications

Many different medications are prescribed for patients with myositis to treat symptoms of inflammation, pain, swelling, and fatigue. To treat multiple symptoms, a combination of medications may be prescribed to the same person. Filling all these prescriptions can be stressful because pharmacies are not always nearby or able to complete an order immediately. Another frustration for those taking many medications is swallowing so many pills on a daily basis, often several times a day. In addition, some group members take their regular daily vitamins, thus increasing the number of pills they take each day.

Most people use some form of insurance to cover the costs of medications and doctor appointments. For those continuously submitting bills to their insurance company, the likelihood that questions and complications will arise is heightened. It can be very stressful to deal with insurance companies. The group expressed their concerns about their insurance covering the costs of their IVIG treatments, since they are very expensive. For individuals who are employed, leaving their job might mean losing their insurance coverage. This fear may influence them to stay in their job longer than they are physically able to work, or they may continue in a job they have outgrown rather than make a career change. Trying to perform job responsibilities when fatigued or weak can be very stressful.

The fear of side effects and interactions between medications can also be quite stressful. When one medication causes side effects or is not proving to be effective, a doctor may change the prescription. It can be difficult to change prescriptions because you may worry that you will suffer from ill side effects. Though doctors are usually aware of the medications a person is taking, group members mentioned that they often worry about possible interactions between medications. One group member shared that she recently experienced negative side effects when she began taking a new medication that interacted with another prescription she was taking. Another group member talked about how she gained a lot of weight from Prednisone and it caused her to worry about the health risks of a heavier weight.

Suggestions: One group member carries around a card listing all of her prescriptions. Additionally, she has the vitamins she takes listed as well. At doctor visits, the card is a reminder for the patient and the doctor, especially since many patients visit a number of doctors. The group also discussed how alternative therapies, eating right, and exercising may be helpful in improving how a person feels, while potentially diminishing the need for other medications. Though many medications list a host of side effects, the group acknowledged that it doesn't mean that you'll experience any of them. Each person reacts differently. The group discussed the importance of concentrating on one's own individual health and treatment plan because it isn't beneficial to compare side effects or CPK levels. 
Stressful events occur for most people everyday. It can be very helpful to learn and practice stress reduction techniques, whether it's a massage or a funny movie. Members from our group suggested reading in the park, listening to a nature CD, taking leisurely walks along the river, tuning into classical radio stations, and writing in a journal. You may never be able to fully eliminate stress in your life, but you can develop more effective ways to cope with it.

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.

^ Back to Top