I live with a chronic pain condition called trigeminal neuralgia and I am privileged that I can still work with my illness.
I know a lot of people with TN that can’t work. That might be me some day.
I know people who work on reduced hours, I know people who have taken career breaks, I know people on sick leave and I know people who have given up work altogether.
I currently work at a hospital, organising specialist eye clinics. I’ve returned to work part time after maternity leave and I’ll be caring for my daughter after her few mornings in nursery a week (probably harder work than my paid job, as we’re playing and she is a non stop little explorer at the moment, but that’s a different story!).
Until January 2020, I worked full time and this has been the case since I was diagnosed in 2015. I guess on the outside, it looks like I am getting on with working alongside living with facial pain just fine.
I am so tired.
The job I had during my diagnosis was very physically demanding, despite it being an admin job. I was a veterinary receptionist at a popular vets, because it was very large in the centre of a local town and we offered completely free consultations. I would spend my ten hour shifts literally running up and down corridors, I would carry dogs that weighed as much as me and I didn’t get much in way of breaks.
The vets was also so cold, I had to wear a coat and scarf if I was sat at the reception desk and it wasn’t a suitable environment for me to be working, having facial pain that is triggered by a cold breeze. I’d asked for the doors to be fixed so that they didn’t let the cold in and I was told to “wear a vest” by the owner of the practice – I wish I was joking!
I started looking for a new job 6 months after I received my official diagnosis.
The job was really upsetting anyway – apparently, it’s not all puppies coming in for their first vaccinations like I naively imagined – and the physical work environment wasn’t suitable for me, but the attitude of my employer is what solidified my decision to move company.
I used all my annual leave for hospital appointments, because you were bullied by management if you took sick leave.
I worked with a urine infection – I’d tried to call in sick as I needed a wee every half hour, but had been guilt tripped into coming into work. I worked when my face was hurting so much that I’d been up all night. I worked through my medication trials making me vomit in the office. I worked on the morning of my MRI and straight away when it was finished, taking holiday hours for the time the appointment cost me. I booked annual leave for every hospital appointment day.
When I was taking carbamazapine for the first time, I felt incredibly dizzy and drunk. I informed one of the managers that I felt I shouldn’t be handling the drugs that day and was told that I just needed to ‘take my mind off it’. I was called ‘slow’ by a nurse, because my words were slurred when I spoke.
I remember I took two days off sick (my only sick days when I worked there) with a neuralgia flare up, caused by a heavy cold, and the area manager of the company emailed the whole team saying that ‘people need to consider the wider implications of being off sick’ as he’d ‘had to arrange cover at short notice’.
I was the only person off sick. I gave in my notice that day.
If I’d had to work there much longer, it may have put me out of work completely for a while, due to the physical exhaustion and the lack of annual leave, as I’d used it all for appointments, the stress and the bad management.
I’m a hard worker and I’d been working through the most difficult time in my life. I rarely take a sick day. I don’t like letting people down, whether that be my employer, or myself.
My current job is pretty incredible in terms of being a good match for having trigeminal neuralgia. My job can mostly be done from anywhere, with the exception of site visits. I can work from an office, or I can work from home where I can control my temperature perfectly. I have the luxury of being able to walk to the kitchen and pull out a yoghurt from the fridge and leave it on the side for an hour to warm up, without it getting in the way of other employees, or being accidentally eaten, or thrown away! I can take a short break whenever I need and my job is really flexible in terms of hours.
When I was in the office before maternity leave, occupational health arranged for me to have the perfect desk. It was facing the wall (I know, what a stunning view!), but this was what I needed for my vision. I’m very sensitive to light, I can’t be next to a window. I can’t have a light above my desk. I also was positioned away from the air conditioning unit and it was lovely and warm, because I was in a tight corner of the office.
The most important thing in my opinion, when you’re working with a chronic illness, is having a supportive team and an understanding manager. My team is honestly incredible.
If I said to my colleague, “I need a minute” at any point in the day, she would tell me to go without questioning it. She wouldn’t mind if it was me needing to see to my daughter, me needing to take a call, my pain levels or me just being tired and needing some time. She is the best team mate and the difference that makes to my working life is everything.
Mentally, I feel like I need to stay in work at the moment. Even on my worst pain days over the last six and a half years, I have clung on to my little bit of ‘normality’ in the form of working. I have gone into work on no sleep, looking absolutely awful, feeling even worse, crying, but I feel like I would be giving in to my pain if I didn’t.
So how do I actually manage working with TN?
With a lot of privilege.
I am privileged to be able to work from home. I am privileged that I have my specific job and my team. I am privileged that my TN isn’t currently at a stage where it’s so bad that I can’t work.
I still finish work absolutely exhausted. My face hurts more at the end of the day. I rely on my colleagues to pick up my slack if I have a bad day. I don’t do much in terms of a social life outside of work. It’s going to be interesting to see how I manage with working part time and being a parent with my facial pain!
I’m ready for my next chapter.
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