Within the context of communication of distress and pain in the relationship, I interviewed someone who has had rheumatoid arthritis for many years and had her first surgery in her early 20s. Her name and details will not be disclosed for privacy but I would like to summarize some of the points that are informing my project further. The interview revolved around questions about how she dealt with pain over the years and how that affected her relationships, specifically around communication and assessment of the disease.
One of the things we focused on was how “pain is a very gendered, in a sense that the pain that women go through is under acknowledged and questioned”, even at a medical care level. Various pain killers such as Celebrex that had dangerous side-effects such as removing short term memory were prescribed as a solution. This was the first level of communication difficulty she had to break through. The next level was how she had to compensate for society's rejection of disability, and chronic pain can be a debilitating disability. There became a sense of urgency as she enrolled in a Masters of Computer Science as she was worried about losing the use of her hands. At work, the level of trust was always in question, as to become a leader, one has to show strength, but also vulnerability and a human side. However it is easy to be taken advantage of, as weakness could be used by others to get ahead.
In terms of more intimate communications, with friends and lovers, it often became about them and whether they could deal with her pain. People would exhibit extreme behaviours where they found the situation too overwhelming and then try to overcompensate when they felt guilty. Therefore in those situations, those people needed to protected from the truth, in order not to cause more harm. She gave an example of an ex, who was almost oblivious of the level of pain she was going through, unless explicitly told, which made communication very difficult, as he would not do any of the heavy lifting of observing someone’s body posture of subtle physical changes.
“There have only been a small handful of people who have good interaction styles with pain. The key things are to just acknowledge the presence of the pain, offer protection from environments and offer of assistance but also be ok if help is not accepted.”
She merits the experience of pain and being a woman in America as a similar thing, in it is important to cultivate the ability to identify with the experience of something unique and different to one’s own, because it is not always possible (and should not be necessary) to experience or personally witness it.
In terms of observing and quantifying pain, she offered three measures that were used during her visits with the doctor, which are being taken into consideration of incorporation into the next phase of the project:
It is important to note that structure for self-reporting should be considered into any process, but also to be aware that this needs to be compared with the actual function of the afflicted part of the body, as people who are used to pain being part of their identity tend to under report due to having different relative thresholds of pain.