What if it doesn’t get any better?
I have encountered some very “sick” people this past week. Some have angry outbursts, some have had hospital admissions too numerous to count, some hear voices or see things that are not there, some have experienced unimaginable traumas, some have admittedly done terrible things…some experience or have experienced all of the above. For many, add substance use into the mix. During these visits sometimes the pain and sadness is palpable in the room and sometimes you can feel the energy vibrate off the person you see before you. After a long day, where I saw more than a dozen people in an assisted living facility for those with serious mental illness (an experience I loved—also note assisted living here is NOT what assisted living is at home) I thought about how sad it is that for most of them they will never get any better. Imagine for a moment a life where you sometimes aren’t able to differentiate between what is real or not, a life where you are always fearful that people are hurting you or a life where the medications you take to help you cause such a host of side effects. For someone who wants to help people, this is pretty harsh reality. As a provider it will be hard to accept that there may be a point when a patient will not get any better. This reality is a little devastating, so I started to think. The conclusion I came to is that maybe I don’t get to say what better is for anyone else and that “helping” will not necessarily mean the alleviation of symptoms for some patients.
An instructor in my graduate program often asks, “what does better look like?” when interviewing patients. I have heard it over and over, but I don’t think I ever fully comprehended the importance of it until now. Thinking about what I want for a patient to be better is not nearly as important as asking what they want. That does not mean I will only strive for what they want or that I won’t encourage them if there is more room for improvement of symptoms, but it does mean that I need to ask the question and focus on the goal of that particular individual. The patient’s goal may be much simpler than mine; being able to walk and get a newspaper every day, being able to sleep for more than 2-3 hours a night, hearing one voice instead of a committee, going to the hospital less times per year for psychiatric care, remembering and feeling motivated enough to shower on a weekly basis, or not crying every day. Most likely, it is not 100% elimination of symptoms. I had one person tell me she would miss her voices, but she just wishes they were quieter. She didn’t want them to go away, for her, they were like family I suppose.
So, I guess my takeaway is the realization that sometimes as providers we get carried away with “better”. We get lost in trying to solve symptoms as tricky to navigate as world peace and we forget to look for the small victories. In psychiatric care “better” might not be returning someone to “normal” (whatever that even means). It might mean the energy to get out of bed, the motivation to walk to the mailbox, a volume button for the voices in your own head or any one of a thousand other things. Remembering to ask, “what is better” sometimes makes the problem much easier to solve and will build trust with your patient along the way.
Off to explore and have more Alaksa adventure…more to come later!