It is only until I have had a break of appointments (3 whole weeks it was heaven) have I realised just how much the constant visits to hospitals and medical professionals have had a toll on my mental health over the last year. Not only do appointments zap us off our energy for the day/week/month, I've noticed the impact it has on my mental health. I jump from feeling hopeless with low mood, to anxious and a bit manic to happy on those appointment-free days!
First there is the build up, aka emotional preparation. I normally pretend I don’t need said Doctor/test/treatment to prepare and protect myself from disappointment. Inevitably though I do pin all my hopes on that appointment. Mostly due to desperation for more help with symptoms. I swing between I don’t need anyone I can fix myself…to I don’t have a clue what is going on with my body right now I need help. That in itself is exhausting, add to that thinking and preparing questions, latest letters/test results etc. It often feels like you are preparing for some sort of exam!
Waiting in the waiting room with those nervous ‘I don’t want to be here’ and ‘please be a doctor willing to listen to me’ thoughts running through your head. I know I often sit in waiting rooms with my puzzle book wishing I was anywhere but there. Silly when I moan about long waiting lists and often having waited for months for that appointment. But I think that is part of the issue, after such la long wait for only a matter of a minutes face to face with the doctor, there is even more riding on that appointment.
During the appointment is a weird dynamic. I judge the doctor based on how they speak to me, if they listen to me and what their clinical reasoning leads to in regards to treatment. I am also very aware they are judging me, am I sane? attention seeking? depressed? what will they write in my notes? I both try to be respectful and polite, but whilst also advocating for myself and getting the most I can out of the appointment. I'm an expert patient (and a physiotherapist) and some Doctors love that you take control, others seem to like the old school format of medicine, they are the only expert and I am just 'obsessed with my illness'.
When you don’t understand yourself what is going on in a body and where you feel you have little control over symptoms, it feels even worse when you leave an appointment with the doctor not having many answers either. As soon as a Doctor mentions ‘complex’ ‘different’ ‘interesting’ you know your heart sinks. You would think after years of being labelled as ‘abnormal’ I would have given up on hoping that I was simple and part of the statistics with a simple fix. Yet at least when they say these things they have listened, worse is when they try to fit you in their box which you clearly don’t fit, with symptoms outside of the box are then either dismissed, denied or blamed on us.
At this point your emotions have normally gone full circle and you are back to waiting, wishing and hoping what the next test/appointment will bring. No wonder we get exhausted with appointments. Here are three things I remind myself:
Never stop advocating for yourself - even if that means working your way through medical professionals until you find the one willing to work with you and your body
Take time for yourself – recognise the mental and physical effort each appointment brings and be kind to you before and after.
Trust your instincts – we may not be able to medically reason why things happen but we know our bodies far better than our doctors. We know when things aren’t right, listen to your gut!
What are your tips in managing appointment fatigue?
Lots of love,
Actively Autoimmune xx