Myositis not only affects the person diagnosed, it also impacts the members of their support system and thus the relationships they have with one another. Some relationships may be strengthened with adversity, while others may be weakened. Living with myositis can also affect how a person builds new connections with people. Although each person's support system is unique -- with a variety of people and different types of relationship styles -- there are common relationship challenges that emerge when dealing with a rare, chronic condition like myositis.
People with myositis often have to deal with others trying to give them advice on how they can overcome their symptoms. It can be frustrating because other people often have little or no knowledge of what myositis is really about. Other people mistakenly think that there are simple ways to relieve its symptoms. Friends and family often give well-meaning advice, but sometimes their advice may do more harm than good. People without knowledge of myositis often say:
One group member said that a family member wants her to do intensive exercise, and does not seem to fully understand how myositis affects her strength. For example, she cannot lift weights. The group also talked about being confronted with the old sayings, "No pain, no gain" and "The more you work, the better you'll feel." The group shared how they are the real experts on their condition and sometimes resent that others think they know more.
One group member said that she sometimes wishes that her friends would just listen and say they understand how she feels, rather than try to give advice. She wants her friends to know that they don't have to feel like they should fix her disease because that isn't what she's looking for from friends and family. The group talked about how their doctors are the people they turn to for medical advice. One group member said that even doctors aren't always educated about myositis and that it can cause you to lose trust in them. At times, they can feel very lonely in their disease.
Many group members expressed their appreciation for the Myositis Support Group because they can share their experiences with others who truly understand what they are going through. Members can provide helpful suggestions for coping, as well as real and practical solutions for the challenges they face.
Other people often misunderstand what having myositis actually means. When telling others that you have myositis, they often want to know first if it is life threatening, and then once they realize that it's not, they don't really know how to react. Some group members have gotten the feeling that some people think they should be grateful that myositis is not necessarily critical. However, the severity of illness is not always the only determining factor for how a person copes. The idea of severity is relative and "quality of life" can be just as, or even more, important.
Many people have misperceptions about the disease actually and often mistakenly think it is contagious. A group member shared how the term "autoimmune" has lead people to believe that the member had HIV. Someone in that person's community told a family member that the member "looked really good for having HIV." Other group members said that the same thing had happened to them. The group said they realized that people are often afraid of things they aren't familiar with. Although group members don't always enjoy answering a lot of questions, they worry that some people just make assumptions when they don't have the correct information. Sometimes the assumptions can be worse than reality and may leave others without compassion.
When diagnosed with a disease like myositis, some people feel like they are suddenly placed in a role where they have to educate others not only about their own condition, but also about all autoimmune diseases and chronic conditions. One group member shared that a family member has a disease but has been doing really well and she feels like her family expects her to cope just as well. Just because both of their diseases are rheumatic and chronic, her family members don't seem to recognize that their diseases are very different. This type of comparison can also happen in any relationship where someone knows another person dealing with an autoimmune disease, rheumatic condition, or other chronic illness.
People with rare diseases often struggle to help other people understand the realities of how their disease has affected them, because at the same time they are trying to avoid having their friends feel sorry for them. This is especially difficult when symptoms are invisible, like many of the symptoms of myositis. One group member said that her son's girlfriend is suspicious of her illness and almost believes that she is faking her symptoms or making them seem worse than they really are. On the other hand, group members said that sometimes they feel like hiding their discomfort or weakness and want to portray themselves as feeling great. A person with myositis may try to cover up their feelings by:
Also, the group talked about how they don't want others to feel like they are always talking about myositis. Sometimes they want to forget about their illness for awhile. When one group member reluctantly had to stop working, she was surprised by a coworker's reaction of, "Wow, you're not depressed." Although this member really didn't feel all that great and was upset about quitting her job, she was also happy to catch up with her friend and had many good things in her life to focus on.
The group discussed the vulnerabilities of having a rare illness that people aren't educated about and how people often fear the unknown. One group member pointed out that she finds herself being hesitant to become involved in new relationships, both romantic and friendly, because she fears having the other person reject her at some point in the future. She recognizes that she is more protective of herself since she was diagnosed with myositis.
RECOGNIZING PHYSICAL CHANGES
Another complication to helping others understand myositis is that people with the disease themselves say that it can be hard for them to accept how myositis has caused changes in their bodies. Group members shared that sometimes they try to push themselves to do things that they just aren't capable of doing anymore. A person who isn't ready to accept their limitations may:
The group discussed how sometimes it takes other people to begin noticing their limitations in order for members to begin recognizing the symptoms themselves. One day when she went to work, the person at the door asked if she was going to work or if she was going to see the doctor. It can be difficult to know how to talk to others about myositis when a person doesn't want to admit to himself that he has a disease. One member said he prefers to call it a "condition", and many other group members agreed that this term is more comfortable for them to use when describing myositis. It can be scary not knowing what myositis really means, but it can also be scary to know a lot of information about it.
STRESSING THE IMPORTANCE OF PLANNING AHEAD
Living with a disease like myositis requires individuals to learn how to navigate a number of systems. The group expressed how they are still learning how to maneuver the city, with group members talking about their first ride on the city bus and trip to the movie theater. Group members talked about how they often have to plan ahead before going anywhere to make sure their entire trip is accessible. Planning ahead can be very time-consuming with many phone calls. It can involve a lot of extra steps, such as:
Although you may know how much effort is involved in checking the accessibility of a place, your friends and family may not. The group talked about how they are often invited out to dinner but then cannot attend because the restaurant is not accessible to them. One group member shared how she was so excited about her invitation to an open house for her nephew but when she realized his new apartment was a three-story walkup, she was really disappointed to have to decline the invite. The group talked about how having myositis makes them feel left out at times. They also said that they wouldn't want everyone to feel like everything always revolves around them. Rather than waiting for others to make plans or to wish they would consider your limitations when making plans, it might ease some frustration and disappointment to take on the role of the planner.
ASKING FOR HELP
The group talked about how members of their support system often are well-meaning in their offer to help out, but that it can feel awkward to ask them for something when the need arises. Most group members have heard friends say, "Let me know if you ever need me to get you anything at the grocery store." However, one group expressed appreciation for friends who call to ask, "Do you need anything from the grocery store because I'm on my way there?" The group agreed that this was a much more helpful question to ask and that they would feel more comfortable taking them up on it if the friend was offering to help at that moment. The group thought about how they could let their friends know what would be most helpful for them.
It can be frustrating when the people you deal with most on a daily basis don't do what you wish they would. The group discussed how they could use a different kind of help from significant others. At times, significant others can seem almost over-caring and members shared how they don't like being treated like a child. One group member said that even when completing a task that resulted in a bad experience in the past, he still wants to try again. The group discussed how they don't like others to just assume that they can never do that particular task ever again. One group member talked about how she has learned subtle ways to ask for help from her husband so that she doesn't have to feel like she's always nagging him. People may feel that asking for help is bothersome and they should take pride in their independence. One group member added that he doesn't like to ask for help with little things because his wife takes care of so many bigger things. He really wishes though that she would notice that she could help out with some more minor things as well.
The group also discussed how the need to use a wheelchair, walker, or cane leaves them feeling more vulnerable because there are times when they need to ask for help that involves physical contact. When a person needs to ask for physical help, they may worry about:
Another relationship we discussed was between a parent and child and what it feels like to ask your child for help. Though the parent-child relationship naturally goes through a number of stages, when a parent is diagnosed with a disease like myositis with debilitating symptoms, it can accelerate the movement from one stage to another. Group members discussed their worry about burdening their children with the responsibility caring for them if necessary. They also said they felt bad putting their children in the position of making a decision about whether or not they can care for their parent. The group pointed out that it almost seems more unfair to care for a parent when it happens due to an illness rather than old age, even if both are occurring at the same time.
When relationships revolve around a common interest in a particular activity, such as traveling, hiking, performing a job function, or exercising, the interactions with these people can change after myositis. The group discussed how they feel like they have less in common with some of their friends, coworkers, neighbors, or even family members since myositis. Relationships may change because of the challenges of dealing with symptoms, such as:
A person with myositis may worry that others perceive them as unreliable when they cancel plans. They also worry that people may not want to share the details of an exciting trip or reaching a goal because the friend fears it might upset them. Not only do members miss the activities that once brought them great joy, they also miss the friendships. Though some friendships have changed and others have ended, there are people with common interests out there and people willing to make new friends. You can even find another friend dealing with the same or a different chronic illness who can truly understand what it's like to have myositis.
The group touched many important aspects of maintaining relationships and how myositis has changed the way many members relate to others.
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.