Finding Support When You Have Fibromyalgia

If you have fibromyalgia, you don’t have to deal with it alone. You can depend on various fibromyalgia organizations and groups to provide emotional and mental support while also supplying you with the latest information on fibromyalgia. In fact, you can greatly benefit by turning to various support or peer groups, associations or organizations.

Why You Need Support

You are undergoing a difficult time in your life if you have fibromyalgia. It’s a serious medical problem that can make even simple tasks very difficult to complete. What is more worrisome is that this disease, fibromyalgia, is still derided by many medical and non-medical persons as being psychologically and not physically based. It’s still very misunderstood by a large number of people. Many find that even family and close friends may doubt the diagnosis.

Often, the result of these attitudes towards fibromyalgia is confusion, self-doubt and far too many unanswered questions. In order to avoid increased stress, depression and a reluctance to deal with potential and up-coming issues, you need to talk to someone, other than your doctor, who has accepted and understands the diagnosis. In other words, you need support. More importantly, you need the type of support that:

  • Understands fibromyalgia and does not question its validity
  • Is familiar with the various disease manifestations in terms of symptoms and how they can affect you
  • Recognizes potential health issues that may occur down the road
  • Can seriously discuss how to deal with certain medical aspects of the disease
  • Knows what authorities you may need to call upon for help
  • Is aware of the various legal aspects involved in obtaining benefits – everything from insurance claims to the Family and Medical Leave (FML) Act to Social Security Insurance and Social Security Disability Insurance
  • Can relate to what you are going through, be supportive and offer suggestions, while not making judgment calls

It is possible to find some of these characteristics in a family member, significant other or close friend. More likely, you have to search for people outside your immediate circle of family and friends and connect with one or more fibromyalgia support groups. Getting acknowledgment by peers can be empowering and helpful in managing fibromyalgia symptoms.[1]

Types of Support Groups

There are various types of support groups. Each can play a unique role in helping you deal with or manage fibromyalgia. The most common ones include:

  • Regional or area support groups
  • Community support groups that meet locally to discuss issues
  • Online support groups
  • Internet chat groups
  • Therapy groups
  • Yoga, meditation and other related activities groups[2]

The groups you choose to participate in will depend on your location and on your willingness to access support through online sources.

Locating Support Groups

It is not difficult to locate a support group. You can go online and use a search engine to find a specific group – chat or otherwise. There are also large associations and fibromyalgia support groups that operate forums themselves or can provide you with suggestions for affiliated or recognized organizations operating online.

If you are looking for a local fibromyalgia support group, the first person to ask is your doctor. You can also look in the yellow pages or online by limiting your search to your local area. Sometimes there are local groups operated by local community centers, hospitals and church groups. Once you have located the local support group, you can attend a meeting and decide if this type of forum is for you. Many people join both a local and online support group.

Another way to connect with fibromyalgia groups is to attend workshops offered by the medical community. These workshops frequently provide plenty of resources you can check out at your leisure.

Positive Aspects of Joining an Internet or Online Chat Group

There are several reasons why you may want to join a fibromyalgia support group. They include:

  • Access to some of the latest research information around the world
  • Access to personal and individualized discussions of what does and does not work for others with fibromyalgia
  • A list of some of the more current research projects including fibromyalgia clinical trials available and where they are located
  • Access and online links to journal articles on different topics concerning fibromyalgia
  • Ability to openly talk about personal medical, social and economic issues without censure
  • Provides emotional and psychological release and can help reduce stress and frustration levels
  • Can connect you with one or more persons who actually understand what you are going through
  • Makes you feel empowered[3]
  • Online access gives you access 24-7 making it easy for you to connect

Negative Aspects of Joining an Internet or Online Chat Group

The online support groups you choose should be professional and recognized as having some authority. There are valid reasons to avoid some fibromyalgia internet based support groups or online chat groups.[4] These include:

  • Many individuals may be talking from experience but have little or no actual medical expertise
  • The material provided may not always be an accurate portrayal of what is actually happening
  • Some material provided may be biased, dated or simply inaccurate
  • You may actually feel more depressed or frustrated when you talk online as everyone may, for that day, be expressing a lot of negative emotions
  • You may feel disconnected because of the medium

An internet support group can be beneficial if you do your research and are careful about the advice you depend on. If online support groups don’t appeal to you, then you may want to consider contacting a local community group.

Why a Community Support Group

Support groups come in all sizes and forms. Community groups may be large or small. In some instances, they can be both, with large organizations offering smaller more personal meetings as well as larger group sessions.

In small communities or towns, you may not feel comfortable sharing personal information in a group session where everyone knows everyone. In general, however, there are more positive benefits than disadvantages from joining a community support group.

The benefits of a community support group are many. You are in actual contact with individuals in your own community that have the same issues and health problems. This could make you feel less like an oddity.[5] Other reasons for choosing a community group include:

  • Close proximity
  • A sense of communal belonging
  • Can include your friends and family, therefore providing a chance to further their insight into your issues
  • Able to physically visit with other fibromyalgia patients
  • Can often get valuable information to help you on your journey through this syndrome. Community groups share local as well as national and international information
  • Can share your own experiences and get feedback on such things as local health care providers, insurance companies, exercises, diet and different medications and their effects
  • Able to take part in social activities as well as discuss issues that relate to fibromyalgia
  • Group may periodically arrange for a speaker or expert on a particular subject

If your community has several groups, it’s good to arrange to visit each one. It’s also advisable to attend more than one meeting before you decide upon becoming a member of any of them.

Conclusion

Joining a support group can be beneficial to you and your family. This is true whether you prefer an online or community group. Consider the pros and cons before you become a part of any support group. Pick wisely and you will be able to access information that will help you and your loved ones learn how to best manage your fibromyalgia. You may also make new long lasting friendships.

References  

[1] Sallinen , M; Kukkurainen, ML; and Peltokallio, L (2011). “Finally Heard, Believed and Accepted – Peer Support in The Narratives of Women with Fibromyalgia.” Patient Education and Counseling, 85(2):e126-e130.

[2] Arthritis Foundation (2006). Good Living With Fibromyalgia. Atlanta, GA: Arthritis Foundation.

[3] Barker, KK (2008). “Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness.”  Journal of Health and Social Behavior, 49(1): 20-36.

[4] Marek, CC (2004). The First Year: Fibromyalgia. New York: Marlowe and Co.

[5] Mitchell, D (2011). The Complete Guide To Healing Fibromyalgia. New York: St. Martin Press.

This article was originally published on July 11, 2012 and last revision and update of it was 9/7/2015