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Fibromyalgia: Overcoming Loneliness
Living with fibromyalgia may feel like round-the-clock isolation. Connecting with supportive people can help you overcome these emotional side effects.
By Madeline R. Vann, MPH
Medically Reviewed by Farrokh Sohrabi, MD
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Beyond the physical pain of fibromyalgia is the emotional pain that can come from trying to cope with a relentless condition. Whether it's a lack of understanding from friends or family members or the practicalities of working through fibromyalgia pain, fatigue, and other fibromyalgia symptoms, it's easy to feel that you’re set adrift.
“Fibro makes you feel very lonely and isolated, as it makes it very difficult to do the things you want to do,” says fibromyalgia sufferer Joanne Nelson of Manchester, England. “You can never make plans, as you never know how you are going to feel from day to day.”
Before her diagnosis, Nelson lived an active life as a runner and outdoorsman. “Even with my kids, I would just pack a tent and we were off for the weekend,” she recalls. Now, though, she can barely find comfortable clothing to wear, much less leave the house.
Why Fibromyalgia Can Be Isolating
There are understandable reasons why living with fibromyalgia can make it seem like you’re living on the fringe:
- Invisibility.Fibromyalgia is an intensely painful experience for you, but it isn’t obvious to people around you in the way that pain caused by a broken bone or a disfiguring disability is. “This tendency for fibromyalgia to be invisible is what often leads to a sense of loneliness and isolation,” says fibromyalgia expert Ravi Prasad, PhD, a clinical assistant professor and assistant chief in the division of pain management at Stanford University Medical Center in Redwood City, Calif.
- Trauma.Although the cause of fibromyalgia isn’t fully understood, fibromyalgia symptoms are sometimes triggered by a traumatic event. “Our bodies were meant to live in ‘rest and relax,’ not ‘fight or flight,’” says fibromyalgia therapist Sloan Gorman, MSW, LCSW, who has a practice in Milford, Conn. Yet fibromyalgia is like a permanent fight-or-flight setting — like a fireman who is always running into a burning building — and when your whole system is set to trauma response, it’s hard to invest in relationships.
- Altered sense of self.Both trauma and chronic pain can change the way you relate to yourself. “The most important relationship you have is with yourself,” says Gorman. If that relationship is disrupted, you’ll see ripple effects in all your other relationships.
- Other people’s reactions.Living with fibromyalgia often means becoming accustomed to other people — friends, family, even doctors — telling you that your condition is “all in your head” and that you should “snap out of it.” But you know what you feel is real, and being misunderstood and judged isn’t conducive to happy relationships.
- Practical barriers.Pain, fatigue, and related problems such as sleeplessness and mood changes can make it difficult to show up at social events or even work up the energy for a phone call. These barriers cause isolation and depression. “As people with fibromyalgia pull away from activities that gave their life meaning and become more socially withdrawn, it is not uncommon for symptoms of depression to slowly evolve,” says Prasad.
Fibromyalgia: Making Connections
If fibromyalgia is leading to isolation and loneliness, there’s a lot you can do to get to a better, more connected way of living. Here are some of the steps you can take:
- Treat the trauma.“You have to put out the fire,” says Gorman, who uses therapeutic tools developed to address trauma as part of her treatment approach for her fibromyalgia patients.
- Treat the fibromyalgia.“Even though there is no medical cure for fibromyalgia, the degree of suffering that individuals experience can be improved,” says Prasad. Working with a doctor who understands fibromyalgia and is keeping up with cutting-edge research should lead to effective treatment approaches — perhaps medication, lifestyle changes, or alternative therapies such as acupuncture.
- Seek out others with fibro.You want a variety of relationships, and spending time with others who have fibromyalgia could ease some of your isolation. Gorman advises looking for or starting movement-oriented groups, such as a yoga class specifically for people with fibromyalgia. Nelson advocates in favor of online connections, such as Facebook or virtual support groups, where you will find others who know what you're going through and can share experiences.
- Avoid the naysayers.“Fibromyalgia is absolutely real,” emphasizes Gorman. “Don’t engage with the people who say it’s not.” You can’t cut off your family, but limit time with those who refuse to acknowledge what you’re going through. Also, find a supportive doctor if the one you currently have doesn’t truly acknowledge fibromyalgia.
- Manage any stress and depression.Whether it stems from living with fibromyalgia or has another cause, depression is a common coexisting condition with fibro. Depression treatment or stress-coping skills should be part of your fibromyalgia treatment plan and will help ease loneliness as part of the healing process.
And don't forget to give yourself time to see results from these strategies. “We have the power to choose how we interpret and respond to comments from others, but development of this skill requires time and practice,” says Prasad. As your emotional distress eases and you find ways to manage your stressful relationships, you’ll start to feel less isolated.
Prasad emphasizes that the stress of believing you will be trapped forever in an incurable, painful condition can be a self-fulfilling prophecy. So if that’s your mind-set, it’s time to start building a support system of doctors, nurses, friends, and family. This network will help you cope with and manage your fibromyalgia symptoms more effectively so you can get back to the life you deserve.
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