When family communication breaks down, the bonds of affection may seem to deteriorate as well.
It is by no means uncommon for people to say that they feel that their family doesn't want to know about their pain or that they are afraid to express their pain in case they become a burden. Some may even say that they are unable to hide their pain because family members can read it from their facial expression or their posture.
Maintaining good communication is vital. Without it, the family are unable to adjust their expectations and misunderstandings set in.
The ill person may feel no one understands, the family members may feel that he/she is not making an effort, or alternatively, they may be over-protective.
Family members are likely to interpret expression of pain as a signal that they must do something to help. Some people may feel that it is imperative to ?fix' the pain or ?make it go away', and may feel inadequate if their strategies are unsuccessful.
Others may find expression of pain distressing and therefore wish to avoid exposing themselves to finding out about it; they may appear to be uncaring. They may feel overwhelmed or resentful and the person in pain may feel they are not being supported.
Dr. Kimeron Hardin([1]) suggests the following steps to improve communication:
Step 1: Education: informing the family about pain and ways of managing it. (This may be best done with a medical professional)
Step 2: Developing a simple system for describing pain; such as a scale of 0-10 (0= no pain, 10= worst imaginable) 5 would be an average level. This allows direct communication and avoidance of emotive terminology.
Step 3: contains 3 further steps:
- communicate your current pain level (don't assume the family knows without being told)
- tell them what you are going to do about the pain (take charge of your own pain management, rather than asking for help: this reduces the pressure on the family and thus the ?alarm' element, and may enhance their respect for you)
- ask for any help directly; families often don't know how to help, which is frustrating for them and the person in pain, and may lead to endless ?problem-solving' suggestions or pushes to try new treatments.
These steps aim to help reduce conflicting or confusing messages, relieve pressure on the family and frustration for the person in pain.
(See also: The Chronic Pain Control Workbook, A Step-By-Step Guide for Coping With And Overcoming Pain, Ellen Mohr Catalano, M.A. & Kimeron N. Hardin, Ph.D., New Harbinger Publications, Inc., 1996 )
Occasionally, there may be a problem with a family who disapproves of intractable pain treatment. Expert Forest Tennant wrote about this in the magazine, Intractable Pain News in July 1999.
He cited two cases in which spouses objected to medication with morphine-related drugs, to the point of threatening divorce in one case and filing a malpractice suit in the other.
Families may view medication as a necessary, or even an unnecessary, evil.
If the side effects are perceived as impacting upon the patient's well being or upon family life, then objections may be strenuous. However, sometimes, objections are raised because of ignorance.
There remains a stigma attached to opiate drugs (morphine and related medication) because of the perception that they are addictive.
In fact, used appropriately to combat pain, there is minimal risk of addiction (the body becomes used to the drug, but behaviour does not change, nor is there usually a need for increasing doses unless the medical condition requires an increased amount).
The notion that the pain sufferer should ?tough it out' is not helpful and can be very damaging.
In general, any family member who is doubtful as to the necessity of medication may be best to first discuss the matter openly with the patient and then perhaps with the medical practitioner responsible for prescribing, in a joint consultation with the patient.
There are some highly unfortunate sufferers who find their family totally unsupportive; one such woman in her late 20s wrote a moving account on a Mental health forum: extracted here:
"Last week I saw a psychiatrist at the insistence of my family because they insist I am severely depressed... My problem with depression is due to severe chronic pain... My family does not see it as a pain issue but a depression issue because I never smile... If they lived in such horrible pain they would get down in the dumps too. However I saw the psychiatrist who saw my point of view and agrees my problem is mainly the pain issue ... My problem is the pain and totally unsupportive family who refuse to believe pain can do this to a person... How do or can I make them understand that pain can do this to a person?"
The response to her heartfelt plea was limited, but in essence the only possible answer: the family need to go with her to the doctor to learn about her condition and come to understand what she is going through.
That, of course, requires them to be willing to do so, and this is sadly not always the case.
[1] available at www.selfcare.com/ Talking to your family about chronic pain
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