The administrative burden of chronic illness

When you’re diagnosed with a chronic illness, i.e. an illness that you’re going to have for the rest of your life, there is an initial period of shock and disruption. This might last for weeks or months, but eventually you find that life settles down and you adjust to the reality of living with your condition.

Aside from the changes to your working life, family life, your expectations and plans for the future, the greatest impact is the extent of the administration you need to take on to manage your condition. From planning appointments to monitoring your symptoms, from adhering to your drug routine to having the tests you need, this admin can feel like a full-time job.

In my case, the things I need to manage are:

• four appointments a year with an MS specialist nurse
• one appointment a year with a neurologist
• one appointment a year with an MS community nurse
• one appointment a year with rehabilitation services, to check my FES
• ad hoc appointments with a neurophysiotherapist
• a blood test every month
• a repeat prescription to order and pick up every 6 weeks
• physio exercises to do every day
• drugs to take every day
• symptoms that fluctuate, which I need to keep a record of

MS, like many chronic illnesses, presents a problem with staying on top of all these tasks. Namely, memory issues. I would be lost without the calendar on my mobile phone to remind me of the things I need to do, but even that isn’t foolproof. For instance, I’ve discovered that I’m very good of switching off a reminder to take my drugs, getting slightly distracted on my way to take them, and then forgetting altogether what I was doing. And if I don’t add an appointment to my calendar within minutes of making it, the date and time will evaporate from my brain.

There are various mobile phone apps that have been developed for people with MS, and for people to manage their health – to do exercise or order prescriptions online – but none of them do all the things I need, and a multitude of apps on my phone is just an extra management task.

I’d love for everything to be in one place, in one app – appointments, exercises, medication reminders, symptom recording. If I was techy enough I’d develop it myself, but sadly I’m not. Is there anyone reading this who can do it?