Many people living with lupus face very challenging emotional experiences related to their illness. Ellen Schecter, author of Fierce Joy: a Memoir, presented her book, which traces her experience of living with autoimmune illness, and discussed some of the larger themes that arise throughout the book. This inspired a dialogue with the members of the SLE Workshop around aspects of lupus including:
For many members of the SLE Workshop, feeling betrayed by your body can lead to a sense of fear. Ms. Schecter spoke deeply about this fear, which can often accompany chronic illness. Members spent time discussing their own fears, their senses of betrayal and how their daily lives have been affected including:
Members then discussed how some of these fears can be dealt with by trying to maintain hope and a positive attitude. Through this constructive outlook, members were able to move past the fears that might otherwise be devastating.
Ms. Schecter and the SLE Workshop members discussed what it meant to have a functional, trusting and empowering relationship with their doctors and the barriers that may prevent this.
One member said: "What I started doing was writing down the questions that I had, and I made sure not to leave the room until I said my piece."
Another member stated, "It's my job now to make sure that I understand, and to have all my questions answered. I have a habit of not being seen or heard, so I had to force myself to push that aside and let [my doctors] say their piece, then I have my say."
Then Ms. Schecter disclosed, "I would have to write my questions down and hand them to the doctor, because I would always walk away without asking the one that bothered me most. And now [my doctor] knows that."
Another member stated, "I heard from a study that you always have to make it to the third question because the third question is always the hardest one to ask."
Medical histories, interactions with physicians, and past traumas with family members were noted and discussed. This was described in terms of how they have influenced the ways people navigate their health care.
One member felt that because she had children and she was the eldest of her siblings, she could not cry or show any sign of sickness because it would be perceived as weakness. "I happened to be the eldest grandchild and sibling. Since I had a great deal of responsibility, I never wanted to show any sign of weakness."
Other members of the group discussed how their past traumatic experiences have led to the ways they interact with doctors, leading them to never ask any questions about their diagnosis or treatment.
Ms. Schecter talked about her concern that crying would be seen by her doctors - and herself - as a sign of weakness. Even more, she explored her own fear of being perceived as weak just because she was ill.
"If I ever cried in front of someone because I was ill, then people would think I was weak and pity me. That was the last thing I wanted."
But then she met Eric Cassell, a doctor who helped her with pain management using medication, trance and self hypnosis. He told her, "To me, tears are a sign that you are willing to be honest with yourself and with me."
Through her work with Dr. Cassell, Ms. Schecter was able to discover how she learned as a very small child to connect tears and "weakness." She read an excerpt from her book:
"I'm five years old in Children's Hospital, a new and scary place, but it feels as if I've been there for days and days. When I wake up, it's visiting hours and the ward fills up with mommies and daddies, grandpas and grandmas.
But where's my mommy? I wait and wait, but she doesn't come. The big mean nurse, Miss Oliver, squeaks over on white shoes.
"Your mother just called, Ellen; she'll not be coming to see you today. She's too tired and cannot make the long trip from your home."
Just thinking of Mommy at home makes my heavy tears spill over.
"Now, don't start your crying. Have some pity for Mother. She'll come tomorrow."
I pull my covers over my head and make pretend I'm under a white tent at home. I pretend Mommy's coming up the stairs to read me a story, but I know she's not coming. I cry all night, every time I wake up.
The little boy beside me with a red tube in his arm shivers and cries all night. "Coldy, Mama," he wails, "Come, Mama, come!"
But no mommies come, just nurses and doctors. Then the doctor unhooks his red tube, covers the little boy's face with his blanket, and wheels his whole bed away.
Why did he stop shivering? Why was he so pale? Now I'm afraid to cry anymore, ever again."
People could feel the little girl's helplessness and lack of support, and understand why it felt so dangerous for her to cry ever again. Another theme that emerged from the discussion was how acceptable it is for us as adults to express our fear and negative emotions, with or without support - to cry when we need to, but still be viewed as strong individuals.
"Being ‘sick' disease - means the symptoms and the treatments that belong to the medical profession and the medical aspect of lupus. 'Illness' is what happens to us in our lives as a result of the disease. Illness is the way the disease affects the way we think, feel, react and live in our daily lives," Ms. Schecter said, as she introduced the notion that it is possible to "be sick without suffering," as stated by Dr. Cassell.
He helped her live with her, "illness and all the things related to it with the knowledge and attitudes of an adult woman, instead of suffering from them with the limited understanding and resources of a little girl." For example, she said, "he taught me to inject myself instead of having to depend on a doctor or nurse to do it. As a little girl, a hypodermic looked huge and very scary; as an adult, it looks small. And once I learned how to use it, my self-injections didn't hurt one bit."
Another emotional strain that lupus can bring is how to interact with other people in your life, including your family and children. In reference to her child, one member shared, "It's difficult. You're breaking up on the inside, you're trying to understand it and cope with [the diagnosis], then answer this young person's questions as to why I am hospitalized."
Another member said, "I tried to protect them and not let them have to deal with what I was dealing with. But as I found out later on, they felt that they were being shut out."
The workshop ended with a discussion on how to live daily with disease and not let it overcome you.
"What ways have you discovered for doing this?" Ms. Schecter asked. Helpful tips were suggested by many members of the workshop including:
"But learning not to suffer is a process," another member noted. "You have to realize that you can't do this by yourself. You need support from your family, your friends, the people you care about - so let them in."
It is also important to remember that you are the expert when living with lupus, so being aware of your capabilities is important. "It's okay - you don't have to feel bad that you're not fulfilling what people want, because that's their expectations. You don't have to entertain other people. It's okay that you can't go to the store. It's okay that you aren't doing anything."
"There is nothing shameful about being ill."
Learn more about the HSS SLE Workshop, a free support and education group held monthly for people with lupus and their families and friends.
Summary prepared by Jill Orrock, Master of Social Work Intern and SLE Workshop Coordinator.