When Myositis Knocks on Your Door

Adapted from a presentation to the Myositis Support Group

Phyllis Lowinger, LCSW, led a discussion titled, “When Myositis Knocks on Your Door.” The focus of this was how a diagnosis of myositis may impact one’s partners.

Ms. Lowinger opened the discussion by speaking to the issue of why she objects to the term “caregiver” to refer to the other important people in the life of the person with myositis. She used, as an example, her relationship with her husband, who was diagnosed with inclusion-body myositis in 2011. He remains a father to their two daughters, pays the bills, and continues to participate fully in their marital relationship. Included in their marital vows was remaining together in sickness and in health. It is not implied, she maintains, that when either becomes ill that he or she ceases to be a partner as opposed to becoming a caregiver.

She noted that, indeed, the impact of a diagnosis of myositis can shift responsibilities in a relationship and that a partner can take on caregiving responsibilities. But, that person remains a partner.

Thus, Ms. Lowinger emphasized the difference between the term “caregiving” being used to refer to an activity, as opposed to defining a relationship. In contrast, she noted that – in doing research for this workshop at the annual myositis conference – the term “caregiver” was used when referring to those who were caring for individuals with Alzheimer’s disease; she acknowledges that the term “caregiver” seems more appropriate when there is a loss of mutual connection.

Ms. Lowinger asked group attendees to share what having myositis has meant to those who have been diagnosed as well as to their partners. In their own words, members shared:

  • “It has been difficult for me to watch someone I love struggle. I have a sense of guilt when I walk ahead, knowing that he/she is unable to keep up with me.”
  • “I don’t know how to handle the strong emotions that I have. I find it hard to deal with others who just don’t understand what I’m going through, that I haven’t been alright.”
  • “I used to see myself as being strong, physically able, the one to help others. After I stopped feeling sorry for myself, I decided to help others with myositis. I want to be able to help them, so I need to be in touch with my own feelings of vulnerability and help them learn how to cope and adapt.”
  • “Just trying to get out of the house is such a production!”
  • “Finding motivation to keep at it, such as exercising, can be a real challenge. When you are healthy and exercise, you usually see some physical benefit, an increase in strength and ability. Now, I exercise to keep from losing what I have. It’s not the same.”
  • “I think that many don’t understand how hard it is to lose your independence. I was once able to go sailing and be a help to the crew. Now, I can be a hindrance and a danger. I’ve lost motivation to work out, although I’m trying to get it back.”

These are sentiments expressed by those with myositis and their care partners. It may be easier to deal with loss when there is an understanding of the psychological, as well as physical upheaval that occurs.

Ms. Lowinger reflected that a thread that ran through members’ comments was the issue of loss. A diagnosis of myositis can pose a major crisis in the lives of the individuals diagnosed and their family, friends, and close connections. For those diagnosed, there are physical losses. However, loved ones, as well as those diagnosed, experience psychological losses. The psychologist Pauline Boss referred to these losses as “ambiguous loss.” It is the loss of the former self (Boss,1999/2000).

It is important for all to acknowledge these losses and what these losses mean to them. As with all loss, we must allow ourselves to grieve and mourn for how one’s life has changed and how one’s life may change in the future. New losses may appear and, again, these must be acknowledged and mourned.

Ms. Lowinger shared that, at a group for partners at TMA’s conference, a young man who was recently married said that his wife was diagnosed with myositis shortly after they were married. He felt that everyone focused on her; no one asked how he was doing. He felt guilty about being angry about this. Ms. Lowinger stated that these feelings are normal.

In dealing with loss, we must look at who we are. How have we dealt with loss in the past? Is it difficult to express our needs? How does myositis make you feel about yourself? Further, she stated, we must allow ourselves to acknowledge and grieve our losses in order to move forward. Unlike more traditional loss, such as the loss of a loved one, there are few rituals to deal with this kind of loss; and, we need to find ways to mourn. Ms. Lowinger said that rituals can be helpful as a way to move forward toward resolution. Here’s what one member offered in her attempt to “bargain” and then find some resolution:

“I couldn’t play sports anymore, so I took piano lessons. Then I lost the use of my fingers that was needed to play. So I joined a gourmet cooking club, but then I had difficulty swallowing. Then, I decided to volunteer as a literacy teacher and lost my ability to speak for extended periods of time. So… I laid down on the floor and kind of gave up. My doctor suggested that I throw myself an ‘I feel sorry for (fill in your name) party.’ Which I did. I drank wine, ate cheese, ate and drank what was so difficult for me to drink and swallow and said goodbye to the former self who could eat and drink those things without physical consequences. I was tired of bargaining.” This member described that this was very therapeutic and helped her move on. It should be noted, also, that she continues to volunteer to help the homeless. Ms. Lowinger reflected each step was an attempt to move forward.

Ms. Lowinger offered additional ideas to help in the process of moving on. It is important to understand that, although you may have learned to accept losses, new losses may appear at different times. However, it is equally important to realize that you can get back to feeling better.

Communication is key! Many people have trouble expressing their needs for various reasons. It is important for partners and people with myositis to communicate their needs. While illness can make communication more difficult, it can also force us to learn to communicate more effectively in new ways. One group member paraphrased her ability to do just this: “I’m going to tell you exactly what I need. You won’t have to guess, and you won’t have to read my mind!” This is especially true with “invisible illnesses” like myositis. This helps all concerned to have the ability to make decisions about what they can and cannot do.

  • Try to have a team of support. It can be helpful to know that someone can accompany you to medical appointments, another can help with shopping, or help with activities of daily living. When help is divided, there is less possibility for one person to feel overburdened.
  • Accept people for who they are. Some people are able to help more than others. Perhaps there is a friend who is always available, but there are also friends who – although able to do less – can be helpful in some way. As a care partner, it is also important to know your own limitations – which brings us to:
  • Partners must learn to care for themselves as well. As one group member and care partner shared, “Friends often ask how my partner is doing but forget to ask about me!” We’ve heard this many times, but it bears repeating and repeating. We can’t help others if we don’t care for ourselves first!

Ms. Lowinger ended by highlighting the importance of support groups like ours, where what is shared is understood by everyone in the room – no explanation needed. And, if possible, to be able to attend the largest support group: The Myositis Association’s Annual Patient Conference.

Learn more about the HSS Myositis Support Group, a free support and education group, held monthly for people with myositis and their family and friends.


Suzan Fischbein, LCSW
Sr. Social Work Coordinator II
Program Coordinator
Myositis Support Program
Hospital for Special Surgery 

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Boss, P. Ambiguous loss: Learning to live with unresolved grief. Cambridge, MA: Harvard University Press, 1999, 2000.

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