As someone with near flawless adherence for the last four years I was shocked when I recently fell off the rails. It seems none of us are perfect…
When I was diagnosed back in 2011 I was terrified, I thought I was going to die for certain. Then when I found out how simple medication could be, and when I was lucky enough to start early on a single pill combination I made a promise to myself that I’d treat these medications with respect. The doctors gave me these expensive life saving pills, and I was bloody well going to take them on time every day.
Over the last four years I’ve had the odd slip up, a late dose here and maybe a missed dose there, but nothing major – certainly no more than a handful over the course of a year. Then 2016 happened.
I went into 2016 with such hope for the future, I was engaged to be wed, my work was picking up for the coming year and holidays were booked. What could go wrong. Well, apparently, all of it, all at once. Only a few weeks into the new year and I found myself single, homeless, chasing clients to pay my invoices, and undergoing diagnostics for a neurodegenerative disease – all of which left me teetering on the edge of a nervous breakdown.
With all this going on my normal daily routine had gone out of the window somewhat, and despite phone/watch alarms and a pillbox so had my flawless adherence.
Looking at my pill boxes, counting the number left in my bottle and trying to remember what happened on various days (easier said than done lately), I worked out that I’ve probably missed four doses, and had another six late (not on time, but within six hours) in three weeks. Now that’s not going to cause me any big issues in the long run, but it’s certainly not good.
I’m so angry, upset and disappointed with myself. I made a promise that I’d take these pills on time every day, and I’ve properly messed up. But now I can start to get myself back on track. I’ve got even more alarms set up, and I have friends texting/calling me at 1830 each day to check I’m taking them. Slowly and surely I’m getting back into the routine again.
So much pressure is put on HIV Positive people to maintain perfect adherence, that’s a minimum of 365 pills a year (I’ve got one friend who takes 14 pills a day, that’s 5,110 a year), that’s a lot of pills. When speaking at a conference I once asked a room full of doctors to put their hands up if they’d ever completed a week-long course of antibiotics perfectly, none had. That’s one week, but this is every day for the rest of our lives.
All of this has gone to show me how fragile and tenuous our hold on our adherence can be. If I as an employed, comfortable and settled adult who understands the importance of taking my medication on-time am having adherence issues due to life events is it any wonder that people with much more unsettled and complicated lives have real trouble with their adherence?
The list of things that could affect how able or willing people are to adhere is unending, but just think of those who live with people who don’t know their status and have to hide their medication, those who don’t fully understand why they have to take their medication, young people rebelling against parents/doctors, those who work antisocial/irregular shift patterns, those with eating disorders, depression… I could go on.
We are complex people, who live in a complex world, and then we have complications piled upon us (homes, relationships, employment, family, health, etc). Perhaps we shouldn’t be so hard on ourselves when we slip up, and perhaps our healthcare professionals should put so much pressure on us to pull off something that for many of us is an impossible task?
No matter how much we might like to believe it, none of us are perfect. Look after yourselves.
I’d like to add a special thank you to my amazing friend Tom D for giving me a new home, and to Anthony M and Lee W for listening to my nonsensical ramblings, and reminding me to take my pills during the last few difficult weeks.
You can follow me on Twitter as @PositiveLad
You can support beyondpositive’s work,
helping giving those with HIV a voice,
by donating via Paypal