Explaining pain to friends and relatives (tips provided)
How difficult it can be
Over the last 25 years of supporting clients with pain conditions they have consistently said the same thing to me, regarding relatives and friends;
‘‘They just don’t understand….’’
They also quote various comments from friends and family, which whilst they are obviously trying to be supportive, can sometimes feel frustrating as the person with the pain doesn’t feel heard in their experience fully. These might be comments such as;
‘‘I know what you mean – my knee feels just like that”
‘‘There must be something the doctor can do”
“Have you tried a firmer mattress”
“Have you tried……….”
“You seemed fine yesterday”
“Should you really be doing that if you are in so much pain”
Part of what can add to this frustration is that it is very difficult to describe pain to anyone else.
The IASP (international association for the study of pain) defines pain as
“an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”
Explaining pain and its impact to others so that they can empathise better, is tough
The definition is important because it links emotion and experience to the sensory event. This means that the only way of deciding whether someone has pain is by asking them or picking up clues from the way they behave.
However, it is still a very difficult explanation to get your head around…
Trying to explain the actual sensory experience is difficult. You may use the terms, burning, sharp, tingling, shooting but do these words give useful information to those not experiencing the same thing? Describing how you emotionally feel may add to the story but again it can be difficult for others to understand your emotional responses.
Your appearance or behaviour may give some clues. For example, if you walk with a stick or crutches that will give a sign that something is wrong. If you rub your arm when it is sore that will give some information to the observer. If your gait is awkward or when you stand you put all your weight through your good leg that adds to the picture.
Also remember that if you only see people when you are having a good day and have done your hair and makeup this is giving some information – you look fine!!
People in persistent pain have said it would be useful to have an informative tattoo on their forehead – maybe something like – ‘still in pain!’
How can we talk about our pain to others?
One suggestion to this dilemma of sharing our experience of pain may be to consider giving some accurate verbal or written information to other people. The amount of detail shared is up to you. Some friends or relatives may be interested in your full medical history, some may not. Think about why people need to know and how this information may improve their understanding. Usually this comes down to a very brief description of pain and much more information about how it affects you.
Here are some examples;
“I have persistent low back pain which makes sitting or standing for any length of time difficult. This means that I must change my position regularly, so I hope you don’t mind if I stand up whilst we are talking”
“I have pain in my hip which gets worse if I walk for longer than 10 minutes at a time. I would love to go shopping with you but will need to sit down and rest regularly.”
“I can only go to the cinema if we can book a seat on the aisle. I cannot sit for 2 hours without my pain getting much worse. I will need to fidget, stretch my legs and probably stand up a few times.’’
“I can still mow the lawn, but I need to do it a bit at a time. If I do too much in one go the pain increases to a level where I can’t do anything.”
“I would love to come to the pub with you, but I need to go somewhere with comfortable seats.”
“I won’t be drinking alcohol as it isn’t advisable with my medication and I need to be home by 10pm.”
In these examples there is very little information about pain but some clear information about the impact and how doing things differently is helpful.
Of course, you need to understand your own capabilities and what adaptations are necessary to make an activity more enjoyable before you can communicate these with others.
Clients often say;
“I wouldn’t wish this on anyone but if only they could experience this for a short time they would then understand”
This may provide them with some information about the sensory experience, but they still wouldn’t understand when to help, when not to, when to offer sympathy, when not to, when to say ‘it may be better if you stopped doing that and rest’ and when to let you just get on with it.
Giving people some concrete information or specific instructions about how they can best help may reduce misunderstanding and de-escalate the frustration you experience when they don’t quite respond as you would like them to.
For example, you could say;
“When I am experiencing pain, it helps me to feel comfortable if you ask me what you can do to help rather than guessing or making suggestions.’’
Or
“When my body hurts, I need to feel supported and cared for. The best way for you to do that for me is to give me some quiet time alone and know that I will ask for any help I need or tell you when I am ready to relate again.”
So, a suggestion therefore is to structure your sentence in this way and its more likely the recipient will be able to hear you (because you’re not using language that sounds judging in some way) and you are being clear and specific about their behaviour (rather than who they are!)
So: “When…… (describe pain symptom) ... I need to feel (cared for, understood, supported, respected, empowered and so on) so the best way to help me now is (name desired behaviour: give me space, empty the dishwasher, put some music on for me, turn the tv off, make me a hot water bottle, fetch my pills, take the kids into the other room etc etc).”
So being in pain is a stressful experience and this is compounded by the difficulties of others being able to understand how it is for someone in this situation and how stressful it can also be to see someone we love suffering and to feel so helpless to alleviate it in some way. Hopefully, the suggestions offered in this article, can give you a sense of how it is possible to be creative in the use of our language in order to have meaningful conversation with those that care about us in a way that deepens understanding and mutually compassionate responses.
Beverly Knops, Specialist Occupational Therapist and Clinician & Katherine Sewell