Dr. Bruce Campbell directs the educational CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.org), and online self-help group discussion courses focused on practical advice for dealing with the challenges of chronic illness – such as the following.
Lack of Support: ‘My Family Doesn’t Understand’
Coping with the limitations that chronic health problems impose on our lives, such as the need for pacing… can be challenging if the people in our lives are not supportive of our efforts.
Lack of support can take various forms, including:
• Not believing that we are ill, and
• Not understanding the severity of the limits imposed by chronic fatigue syndrome (CFS), fibromyalgia, and other illnesses.
Here are four ways to confront this obstacle.
Perhaps the most common relationship frustration among people with CFS and FM is not feeling understood and not being believed when we say we are ill.
One response is to make efforts to educate others, while remembering how you may have viewed the condition before you were ill.
If you think educating others about your condition would make them more understanding or supportive, you might talk with them or give them something to read, such as the CFIDS Association of America's pamphlet "For Those Who Care."
We have similar materials in the Family and Friends section of our Library, including the article “Welcome to Holland!”
A woman in our program was successful with a clever approach to sharing the CFIDS Association pamphlet. She gave copies to her husband and adult children, asking that they read it as their birthday present to her one year.
Although the process took a year, one by one her family members came to accept her CFS.
Another person deals with his family's lack of understanding by repeatedly reminding them of his limits. Some people have told us it took several years for their families to understand.
[Ed note: on the subject of explaining limitations, see also the new video presentation of Lupus patient Christine Miserandino’s classic “Spoon Theory of Living with Chronic Illness,” now available in four languages.]
Educating others about CFS and FM often requires patience and is not always successful.
Most who try eventually put limits on their efforts to educate others, focusing on the relationships that are most important and recognizing that some people may never understand or be sympathetic. (See section on Triage, below.)
In our experience, lack of assertiveness is one of the main obstacles to pacing and using assertiveness is crucial to improvement.
Assertiveness can be distinguished from two other ways of dealing with other people: aggressiveness and passivity.
• Being assertive involves stating your views and requests in a way that is respectful of others and reciprocating by listening to others. (Treating others as you would like to be treated.)
• Aggressive behavior involves attacking or ignoring other people's views, interrupting and talking over others.
• Passivity means not taking a position, being reluctant to speak up. If you're passive, you make it easy for others to disregard your wants and needs.
By being assertive - speaking up for yourself, setting limits and saying "No" - you protect yourself and avoid doing things that intensify symptoms. For example, you can teach your family and friends to respect your taking regular rest breaks and can make your limits clear by telling others how long you'll talk on the phone, how much time you will spend at a party, and so on.
Another part of assertiveness is learning to delegate and ask for help.
Others often feel as helpless as you about your illness. Asking them to help you in some specific way replaces the sense of helplessness with a feeling of accomplishment while protecting your health.
A formerly housebound woman in our program provides an example of the use of assertiveness. Mary reports that for several years she told her family that she had severe limits, but she always said "yes" to their requests, leaving her with high symptoms.
Initially she blamed her family for not allowing her to pace herself, but finally decided that the solution was for her to set limits.
By making clear what she would and would not do (for example, setting limits on how often she would babysit her grandchildren), her health improved so much that she was able to return to work.
If you have CFS or FM, it is likely that many relationships will be redefined and some will end.
You can make this transition a conscious and deliberate process by using relationship triage: Making explicit decisions about whom to include in your support network.
One place to start your evaluation might be with the fact that your illness may make you feel more vulnerable to those who are negative or demanding.
The cost of spending time with such people may be great enough to convince you that some relationships are not worth maintaining. You may decide to keep others, and still others you may consider essential.
The general idea is to concentrate on the more valuable or necessary relationships and let others go.
In the words of Dr. David Spiegel of Stanford: "Save your energy and use the illness as an excuse to disengage from unwanted social obligations. Simplify the relationships that are necessary but unrewarding, and eliminate the ones that are unnecessary and unrewarding."
How does this work out with family?
One common solution is to limit contact with relatives in the extended family who prove unsympathetic, but some people go farther. I remember running into an old friend at a college reunion. She told me that she had fibromyalgia, but was doing much better in the last two years.
I asked what had made the difference. Her answer: "I divorced my husband." Ending a marriage is not likely to be anyone's first choice, but given the toll that stress takes on people with FM and CFS, it may be the best option in some cases.
NEW SOURCES OF SUPPORT
Developing new sources of support is another way to handle lack of understanding from family. Such support can come from others with chronic illness or from professionals, such as counselors.
Support groups can be a good place to meet other people with CFS and FM, and also can be a source of leads to therapists.
For directions to organizations that list support groups, see our article “Finding Support Groups and Doctors” for people suffering with CFS or FM. [For other conditions, see the resources listed below.]
Also, sometimes family members understand the severity of your illness if they hear it from an authority figure such as a doctor, or meet other people with CFS/FM through a support group.
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Other support group listings, in no particular order, include:
• For people with Celiac disease or gluten sensitivity, Celiac.com offers a list of local support groups and chapters in the US, and .
• For Interstitial Cystitis/Painful Bladder/Chronic Pelvic Pain patients - the Interstitial Cystitis Association of America offers a linked database of local US and International Support Groups in the US and around the world.
• For Chronic Pain support groups, the American Chronic Pain Association offers a list of groups by State. The database tells you the cities where groups are located and you must call or email the organization for local contact information.
• For family caregivers, the National Family Caregivers Association offers access to a state-level network of volunteers, who have had their own family caregiving experience and now assist others to find information and support.
• For those with mood, anxiety, or other mental health issues, see the American Self-Help Group Clearinghouse – for US states and International.
• MeetUp.com is a site where you can search for - or propose creation of - a local support group on any subject. Click "Find" or "Start." We pulled up support groups in our area searching, for example, on Irritable Bowel Syndrome, Arthritis, Multiple Chemical Sensitivity, and Migraine.
• Patient.co.uk lists hundreds of patient support organizations and self help groups in the UK.
* This article is reproduced with kind permission from www.cfidsselfhelp.org - which offers a large resource library on all aspects of coping with chronic illness.