Results of Fibromyalgia and Family Impact Surveyby Karen Lee Richards Patient Advocate
Last spring, I invited those of you who have fibromyalgia to participate in a survey about what kind of impact fibromyalgia has had on your relationships with family and friends. I am happy to tell you that the results of that survey have been published in the journal Musculoskeletal Care and I can now share them with you.
We had an amazing response from the FM community, with a total of 6,126 people who had been diagnosed with fibromyalgia completing the survey (96% women, 4% men).
Relationships with Spouse/Partner
Three quarters of the survey participants were either married or in a committed relationship. When asked whether or not the spouse/partner understood the impact of FM and how they (the patient) felt about it:
45% reported that their spouse/partner understood how FM affected them, but the patient felt they burdened him/her with their problems.
27% felt their spouse/partner understood how FM affected them and they were glad that they did.
22% felt their spouse/partner did not understand how FM affected them, which made them sad/upset.
6% said their spouse/partner did not understand how FM affected them, but that was ok.
When assessing their satisfaction with their current relationship, there was close to a 50/50 split between those who were satisfied (49.5%) and those who were not satisfied (50.5%). A minority of participants had strongly negative perceptions about their relationships with their spouse/partner.
One third felt that their spouse/partner resented the patient's inability to do things with them.
19% said their spouse/partner questioned the veracity of their FM.
23% reported that their spouse/partner believed they exaggerated their pain.
18% said their spouse/partner accused them of being lazy or selfish.
Half of the people with FM said fibromyalgia had damaged or contributed to the breakup of a current or previous relationship with a spouse/partner. On a more positive note, 15% said their relationship with a spouse/partner had become closer as a result of their FM.
Relationships with Children
Of the participants who had at least one child old enough to understand FM, approximately 20-25% said their child/children question whether their FM is real, think they exaggerate their pain and/or accuse them of being lazy or selfish. One third felt that their children resented their inability to participate in activities.
Relationships with Friends
Seventy-one percent of participants reported having close friends. Of those, 15% said their close friends question whether their FM is real and/or think they exaggerate their pain. Only 7% said that their close friends had accused them of being lazy or selfish. However, 22% felt their friends resent when they're unable to do things with them.
Free Response Question
At the end of the survey, participants were given the opportunity to "share additional concerns about how fibromyalgia may impact your important relationships." More than half (59%) of those taking the survey responded to this open-ended question. While a few people talked about supportive relationships with family and friends, most focused on the negative effects FM had on their relationships. (Note: The negative focus may be, in part, due to the wording of the question, which said to "share additional concerns...")
Typical themes mentioned in this question included:
Loneliness and isolation.
Self-doubt and guilt.
People who don't have FM can't appreciate how much the symptoms impact your life.
Relationships would be better if loved ones believed their FM symptoms were real.
Unpredictability of FM symptoms has a negative effect on relationships.
Fear that loved ones will leave due to their FM.
Impaired sex life.
A few people mentioned additional impaired relationships that had not been addressed in the survey, such as relationships with parents, siblings and grandchildren.
Although relationships with healthcare providers was not part of the survey, several people noted that a lack of understanding and respect from their healthcare providers increased the burden of FM.
This survey demonstrated "that interference with important relationships with family and close friends is not uncommon among individuals with fibromyalgia."
"Although doctors usually ask about symptoms and effects on activities of daily living and work, they may not ask about these important effects on relationships. It's important to let your doctors know about these effects." You may be able to get to work when you have fibro, but that doesn't mean your treatment's working great if your relationships are suffering," said lead author Dawn Marcus, MD. "Hopefully this article will motivate doctors to include questions about relationships. Patients need to recognize relationship interference is common with fibro and important and something that needs to be brought to their doctor's attention."
It was an honor for me to have the opportunity to work with Dr. Marcus on this survey. For many years now, I have been communicating with people who have fibromyalgia and have been hearing relationship stories similar to the themes brought out in this survey. While members of the FM community have been sharing their concerns about their close relationships with one another, my hope is that this study will bring these concerns to the attention of the healthcare professionals who are trying to help us.
Prior to working on this survey, it never occurred to me to mention relationship issues to my primary care doctor. And it probably never occurred to her to ask about them. But the fact is that our relationships can have a significant impact on our progress and should be considered in our overall treatment plan.
I want to express my appreciation to Dr. Marcus for recognizing the importance of close relationships and how they impact us as fibromyalgia patients, and for her efforts in bringing this important issue to the attention of the medical community.
Marcus DA, Richards KL, et al. Fibromyalgia Family and Relationship Impact Exploratory Survey. Musculoskeletal Care. 2012 Nov 21. doi: 10.1002/msc.1039. [Epub ahead of print]