I have been living with chronic illness for a few years now, and I am amazed at how much I am still learning. Not about recovery, or about getting better, but about how to live with sickness, and all that accompanies it. The work of being sick. The appointments, treatments, therapies, and the management of a range of symptoms as best I can every day. There is one aspect of living with a chronic illness I am especially resentful of however, and this is appointments with health care providers.
For the past five months I have been attending an outpatients’ rehabilitation clinic. This has meant more appointments than usual. Twice a week I’ve been going in for exercises in the gym with an exercise physiologist and usually once a week I’ve been there for another appointment with either the occupational therapist, the physiotherapist or the social worker. I’ve also seen three different rehab doctors in my time there. Then I have had the usual GP and specialist appointments. This routine has occupied me quite completely, leaving me with limited energy or capacity for anything else. A lot of my usual activities have been put to the side, or reduced. I haven’t been going to the library, or for walks around the lake. I cut back even more on my already limited social life and I haven’t been able to do as much writing as I would like to. Basically I haven’t had a chance to do much of the stuff that really makes me feel like myself.
Over the past few months attending appointment after appointment I have felt resentful, frustrated, and misunderstood. I have felt like almost every day has been about being sick and about what I can’t do. Yet despite this frustration, I have kept going, giving it everything I could. Booking in and showing up; migraine, or no migraine, in pain or with fatigue. Only cancelling when I’ve been too unwell to drive or stand. Perhaps I was hoping to wow them all with my enthusiastic attitude, determined to be positive and to be the best patient possible. I thought that if they could see the effort I was making they would understand that I am not lazy or reluctant to exercise.
With this activity I was seeing an improvement ever so slight, in my strength and endurance so I felt a duty to keep going, even when I should have stayed home to rest. This would often kick off new episodes or extend current ones as a result.
- I didn’t realise the choices I had around my treatment and therapy regime.
- I didn’t trust myself to exercise without being compelled and held accountable by external forces and
- I worried that if I stopped going I would get worse.
In doing this I was saying to myself that I was not trustworthy and couldn’t be responsible for my own health care. This left me feeling even more frustrated and resentful about the whole situation.
The turning point came just a few days ago. I had gone to rehab to do my 20 minutes or so in the gym and again came home exhausted. I had also had frustrating appointments with the physiotherapist and my GP that week. I was sick of being a patient. Sick of attending appointments, sick of clinicians writing notes about me- sick of trying and failing to explain myself, my symptoms and my experience.
I was talking to my wife about how I was feeling, trying again to get to the bottom of my frustration, trying to understand why I was feeling stuck- I wanted resolution, a shift.
“I don’t like being a patient” I said, talking about my rehab appointments. “I know it’s helping but if it was up to me I wouldn’t be going at all” And that’s when I realised it was up to me, it was only up to me. I did have a choice. I had agency but hadn’t been exercising it. It makes me realise how as patients we are not schooled in being authorities on our own health care. Treatments and therapies, are rarely put to us as choices, but usually they are, I just hadn’t realised this. In a sense I was putting other people in charge of my life. People who don’t know me well, people who don’t know my condition well and people who may have different ways of measuring success to me.
Having finally realised the choices I do have, I feel able to more articulate my health needs and priorities (something I have been trying to do for months). More importantly, I also feel confident that I can best direct my own care and treatment.
To assist me, I have started to write my own healthcare manifesto, it is a work in progress, but I feel so much happier, more empowered and less frustrated just by writing down the things about my healthcare that are most important to me. So here it is so far:
It would be easy to be all consumed by efforts to treat and manage my chronic illness but though it effects much of my day to day experience, ultimately it is just a part of my life. My aim is to find balance and equanimity; to improve my health in ways that I can, and accept the limitations and challenges I cannot change. In response to this aim I will do my best to always:
- Make choices that work for me.
- Research the options available.
- Keep an open mind- but not compromise my goal or vision.
- Remember what I am working towards and what is important to me.
- Speak up if I am not happy with service provided.
- Keep my own copies of notes, reports and files.
- Ask questions- why, why not and what about…?
- Remember that I don’t need to impress my health care providers- I do not need to be a “good” patient.
- Remember that regardless of my physical state I can and do, experience great joy and happiness in my life.
- Remember that working to get better or to recover physically should never come at a cost to my emotional wellbeing or stop me from doing the things that are important to me.
- Remember that exercise isn’t a chore if I am doing things that I enjoy and that have meaning and value to me.
- Acknowledge that all health care, and every appointment, be it medical, allied health or alternative, costs me energy and exposes me to many potential triggers for a migraine episode- it is up to me to weigh up the costs and benefits to each appointment I make.
- Look after myself to the best of my ability- I can’t expect other people too.
- Trust myself .