I’m new to this blogging thing. Real new. I started writing about chronic pain at the suggestion of one of my doctors to help keep my speech and language skills up. And I like it. Mostly, I feel compelled to tell my story. Secondly, I think my story might help someone. I also started reading other peoples writings and was given the suggestion to write my posts in list form. Like a 10 point sermon. sigh. not me at all. But I do notice other blogs/websites/facebook pages do that very same. While some posts are great– there are a LOT of entries out there that are titled things like “6/9/12/15/21 Things Every Person with Chronic Pain Wants You to Know.” I even posted one of these to my personal Facebook a month or so ago.
But now I’ve been thinking. Always a dangerous activity. Why all these bullet pointed lists? Is it that people with chronic pain feel deeply misunderstood as a group and find it difficult to explain their condition to others? I can get behind that. Fer sure. (says the girl who grew up in Southern California in the 80’s) But here is the thing. Chronic pain can be a disease, a symptom of a disease, affect different parts of our bodies and require different treatments to help. Some of us take meds, others of us would not touch them. Some of us work, others of us would give anything to work. For some of us a good day is changing into pajamas, for others it is getting to play with the kids after working. I’m not sure these lists help. They seem kind of reductive. And they sure are confusing. I went through four of these “what you need to know” lists yesterday- and they gave opposite information. For example:
- One list suggested that friends and family members should do a little research on the ill persons condition and bring it up in conversation to show you care, but in many other comments and sayings, a common sentiment that gets quoted is “Are you a doctor, therapist, psychologist, no you are f$#@&^* not. ….. shut the f@#$ up unless you have a MD degree and have learned about this disease.” Now, what’s a girl to do with that?
- This one is good too. “Sometimes I just want to be normal and not talk about my illness” vs “The reason I talk about my illness 24/7 is because it’s my whole life.” Can you say double bind?
- “Please push me when I need it,” vs “Back off, this is between me and my doctor.” (This is land mine territory)
- Love this. “Don’t encourage me to have a drink, drink is the last thing on my mind” vs “Don’t judge me having a drink, sometimes a drink gets me through the afternoon.”
- And finally, never tell a person they don’t look sick or are too young to be ill, while in the same breath say that you try to not look sick. Give the speaker a break- if you are consumed with your illness 24/7, maybe the person saying these things is giving you an awkward compliment- that you don’t look as ill as you say you are and that it is unfortunate one so young is so ill. Try to see people’s hearts. (And if the person is actually accusing you of lying, I’m not sure how much energy I would spend trying to help them understand)
It seems to me that our experience of pain, the illnesses we have, and how we have chosen to cope with said conditions vary considerably from person to person. I am not sure that forwarding on a list is the best way to communicate how we want our loved ones to interact with us. The ‘lists’ oppose each other and kind of put the reader in a double bind. At the very least it kind of makes it look like we expect the readers to be impersonal mind readers.
Mind reading rarely works out well. A little piece of data often gets lost in the translation. Maybe we can admit our pain and illness leads to isolation and is difficult to explain to loved ones – and we deeply want to be seen. We may also find the same is true for our friends and loved ones in dealing with us. What?! I know! So- next steps?
- Get personal, find your own voice and make your own list of what you want your loved ones to know.
- Make time to talk to your friends one-on-one about what you want to share with them.
- If you are making a request that might be hard- use the sandwich approach, start with positive feedback such as “Thank you for doing xyz and listening to me abc- I really appreciate all you do.” Then move onto what you need “I know you already do a lot, but this is important to me, and I wondering if we could talk about…. And finally, finish with a heartfelt thank you- for time spent, for caring etc.
- Remember for every frustration that you have being in pain, feeling guilty, feeling unproductive etc., our caretakers also have corresponding thoughts and feelings that they try to keep from us- financial pressures, feelings of inadequacy because they cannot fix it, being overwhelmed, wishing it were different, frustration when we cancel plans. Try to partner in it together.