Family and Friends…and Your Fibromyalgia

Family and friends – they are an important part of your life. When you develop fibromyalgia, however, they are placed in the middle of a situation that many may not be able to handle well. It can be difficult for you to accept the current situation and you are the one experiencing it. It may be just as difficult for your family and friends to accept a diagnosis they most likely know little about. The result is that the situation creates several conflicting and dynamic situations that your family and you must manage.

Issues

When you are dealing with fibromyalgia, there are several different issues to manage at the same time. Not only are you dealing with the diagnosis, but you have to manage the actual side-effects and prepare for potential associated problems. Problems and issues that can arise with family and friends include:

  • Changing economic status
  • A skeptical friend or family member
  • Confused family or a partner who may be in denial
  • Regret, frustration, anxiety, worry and fear about the problems fibromyalgia introduces to your life and the lives of family and friends[1]
  • Guilt feelings that you can’t maintain a particular lifestyle

Telling Your Family and Friends

Even the most adoring and patient family member or friend does not really understand fibromyalgia. Not only is there still discussion in the medical community about its authenticity as a medical condition, but the symptoms can vary widely. As a result, one of the issues you need to address with family and friends is their need to understand fibromyalgia’s complexity. Since the condition truly is complex and controversial, you are going to have to take the time to thoroughly explain what you know about fibromyalgia, the treatments you will undertake and how it may impact your life.

Communication is important. You need to talk to your family about fibromyalgia as much as necessary. Many women try to pretend that the fibromyalgia is not painful or fatiguing and attempt to maintain a lifestyle that makes the pain and fatigue worse. How you approach the discussion with family members depends on the length of time you have been together with your partner or spouse, your current level of trust, and the amount of understanding and honesty in your relationship. Whatever the status, you need to take the initiative and explain what is happening and the potential effects fibromyalgia will have on your lives together.

If there is to be more than one person in the family involved in the discussion, call a family meeting and discuss it together. This is a great opportunity for the family to show support for you and for each other. If there is just the two of you in the household, make sure to arrange some time for discussion and not put it off. No matter whether the group is large or intimate, consider the following points:

  • Know exactly what you are going to say
  • Have your facts straight – know all that you can about fibromyalgia. You do not need to cite chapter or verse, but you do need to be ready to provide evidence and facts
  • Remember, that you do not live in a vacuum and have family and friends ready to help. You may feel isolated, but those who are your family and friends are in this with you.[2]
  • Tell your family that you may need help and then discuss specific ways help can be provided
  • Recognize others feelings and listen to what they have to say. Communication must always be two-way if it is to remain open.
  • Depending upon your nature and the nature of your family and friends, you may be completely open or not about your feelings. You can mention you are afraid of what this will mean to your relationship various family members, as well as for your ability to continue working and providing money to help the family maintain its current life style. You may bring up how upsetting it is that you may not be able to keep up with housework or taking care of the children in the way you have been doing. You can say you do not like or want to be dependent or obliged to others.
  • If you have younger children, treat them with respect. Talk to them truthfully but do not scare or overwhelm them by being too detailed. You may also want to try to stay a little positive.[3]
  • Whatever you do, do not be pompous, self-righteous or manipulative. This will not accomplish anything constructive. It will not help you or your family pull-together to act as a team any more than if you came to them looking for pity. You need support and you need help in learning how to manage your fibromyalgia so its impact can be minimized.
  • Don’t avoid talking about important issues like finances and medical expenses with your spouse

Personal Issues

It is natural to experience feelings of fear, anxiety, stress and frustration at what the future may hold. It’s normal to worry employment or taking care of your family.[4] Negative thoughts and emotions may occur because you are worried about the future of your family or because you feel it can only go downhill from here. You can deal with these in several different ways, not all mutually exclusive. The first major step you need to take is to communicate your fears. Talk to your family. Explain to your partner the issue and listen to what he or she says. Talk to your employer to see what type of compromise can be made in terms of your work schedule. Talk to your doctor and consider medications, working in a group support system or seeing a psychologist or therapist if the negative thoughts become overwhelming.

Work on a logical plan to help you manage your fear, guilt and anxiety. This may mean turning to alternative and complementary therapies. Breathing exercises can help reduce stress and fear. They have a calming effect. You might also want to take up gentle forms of exercise such as yoga and Tai Chi. Moving purposely can be calming and relaxing. It may not address the fear and guilt over money issues, but it may place you in the right frame of mind to deal with them effectively.

In fact, when possible it helps to include family members or friends in your activities. You can take yoga classes together or learn Tai Chi as a family. It is an excellent way for families to continue doing activities together even as you struggle with pain and stiffness.

Meditation is another potential activity that can reduce stress and, therefore, anxiety. Consider combining meditation with yoga in mindfulness-based stress reduction (MBSR). Reducing your stress levels is important. If you do not reduce your stress level, the severity of certain symptoms can increase too.

Conclusion

Having fibromyalgia is a difficult condition to deal with, and making it more complicated is the fact it impacts your family and friends too. Your family and friends rely on you. You need to be honest with them so they can join you in understanding, managing and defeating fibromyalgia.

References

[1] De Souza,L and Frank, AO (2011). “Patients’ Experiences of the Impact of Chronic Back Pain on Family Life and Work.” Disability and Rehabilitation, 33(4): 310-318.

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

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

[4] Wuytack, F; and Miller, P (2011). “The Lived Experience of Fibromyalgia in Female Patients, a Phenomenological Study.” Chiropractic and Manual Therapies, 19: 19-22.

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