It's been a while since I've posted here, mostly because PhD-related matters have taken over, so that I have become obsessed with p-values as a way of validating the last 12 weeks of my life and work (thankfully I can say I have reached the magic value of p<0.05, so all is well).
I thought that I'd use my return to the world of blogging as a way of revisiting my original purpose for writing this blog; to be a helpful and insightful source of information about everyday life living with a chronic condition.
I want to write about this because I strongly believe that, as a society, we are not well-equipped for dealing with people with chronic conditions (that is, conditions that are not life-threatening, but from which a patient never truly recovers).
You can see hints of this in your local stationery shop. What choice of message do you really have when trying to find a card for someone who's unwell? It essentially boils down to "Get well soon" cards. The imperative nature of this sentence implies a command rather than a hope, and therefore that getting well is somehow in the patient's control (who would love to be better in a flash, but unfortunately life doesn't work like that). These cards reflect the fact that in our society, it seems, there are broadly two categories of people:
1) Those who are acutely ill, who spend their time of sickness in a hospital (rather than in days gone by, when the ill and infirm would often have been cared for at home). The unwell are encouraged to "get well soon" as quickly as possible so they can rejoin group number 2.
2) The completely well, who are able to run around and take part in every single activity that today's frenetic lifestyle throws at them.
It is as if we've forgotten that there are people out there in our homes, schools, places of work, on the bus, attending outpatient appointments, who in fact live every day with some reminder of their chronic condition. And I believe we often forget because those of us with chronic conditions feel a lot of pressure (from within ourselves as well as out there in society) to hide the condition that we live with.
Let me illustrate this with another example. I am often greeted by friends who haven't seen me for a while with "You're looking much better" or "Are you feeling any better?" (please don't worry if you can remember saying this to me at some point - I am as guilty of it as the next person, and I have even less excuse!) Do you see what this does to the listener? Like the ever-more-ubiquitous "how are you?", we are forced to reply yes or agree with the assessment that things are looking up.
Of course, everyone would love it (me most of all) if I could permanently ditch my sticks. But sadly, chronic conditions do not work like that. And by implying, however subtly, that the person in front of you "really should be better by now", you can inadvertently make someone feel guilty for their illness (I would think this is particularly true of people with long-term depression or other mental health conditions, though I have less direct experience of this).
So I would encourage you to remember that there is indeed a group number 3) to add to my analysis above. They are people who live daily life with permanent reminders of a chronic conditions, whether through taking pills, struggling with fatigue, experiencing mental highs and lows, or grappling with unrelenting pain. They are all around you, and many of them will hide their illness or disability in an effort to keep up with today's hectic lifestyle.
How about asking them "So how's life really going for you?" as a way to unlock how things are really going for them? You might be surprised, both by how difficult daily life is for them, and how grateful they are that you've taken an interest.
