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by Lisa Lorden, M.S.
"The hardest thing is not to be able to work magic for a friend." - Maya Patel
Chronic illness presents a variety of challenges to relationships at a time when they are needed the most. Some people with Fibromyalgia (FM) feel an ongoing need to talk about their illness and its impact on their lives. At the same time, many people become more distant or reclusive; this is especially true during periods of severe symptoms, because being around others requires energy that is in such short supply. The mere act of having to pay attention, think and respond to someone causes major stress, headaches and other involuntary reactions for them. It might seem as though this person is pushing you away, when in fact, they really are not able to even carry on a conversation during those times. These alternating needs for distance and closeness can be difficult and confusing.
In addition, a person with FM has experienced enormous losses due to illness. Fibromyalgia often affects every aspect of a person's life, causing a decrease in self-esteem. Once strong and self-confident people may feel inadequate and unlovable due to lack of productivity, inability to work or engage in other activities, discouragement about recovery, financial difficulties caused by the illness, coping with debilitating pain and fatigue on a long-term basis, and so much more. Yet the FM patient is not the only one who is suffering. Watching a friend or loved one struggle with an incurable and poorly understood illness often makes people feel powerless and discouraged. But your friendship does matter, now more than ever; and there are many things you can do:
Educate yourself about Fibromyalgia. Read articles about personal experiences and coping. But don't point out how well someone else may be doing with the illness, and don't try to diagnose or even advise them about treatment.
Be patient and caring.
Understand their need for ongoing rest, and solitude at times.
Acknowledge the seriousness of the illness. Validate feelings of loss, sadness, anger, and hope.
Don't expect them to be able to work or even do basic household chores on a daily basis.
Give them privacy and as much independence as they need.
Offer to help in practical and specific ways; such as grocery shopping, running errands, or household chores.
Understand that looking good or trying to be positive doesn't necessarily mean your loved one feels good!
Make plans flexible to accommodate unpredictable symptoms and fluctuating energy levels. Be understanding when they must be changed or canceled at the last minute.
Realize that your loved one may seem "okay" while you're together but then pay an enormous price later for the over-exertion.
Ask questions about things you don't understand.
Enjoy low-energy activities together.
Express gratitude for what the person with FM still gives to you, even though they may not be able to do some of the things they could before.
Reassure them about how important they are in your life.
When you are not sure about how to be helpful, just ask. But don't pressure them.
Be aware of unpredictable mood swings. Try not to take reactions personally that might seem illogical or over-emotional.
Listen while your friend expresses needs, emotions, and thoughts. But don't try to "fix" them, or control their lives for them.
Express your admiration for your loved one's strength in coping with illness so far.
Learn to be perceptive. You don't have to be a mind-reader, but you can watch for signs of how your loved one is feeling, or when they may need extra help and support, or when they may just need to be alone.
Most important to remember is that just showing that you care means more than you could imagine.
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References:
"For Those Who Care," CFIDS Association brochure.
"Running On Empty," by Katrina Berne, Ph.D.
"Sick and Tired of Feeling Sick and Tired," by Paul Donoghue & Mary Siegel.
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