I once went to a group session relating to chronic illness, and have this vivid memory of everyone’s head spinning around to me when I opened my “hello, my name is…” moment with the fact I managed to work full-time. Some people that were there even told me that I needed to stop working because “that’s what they did”, and the general consensus was that because I worked, I must not be as bad as any of them. I left the appointment having a conversation with my husband about whether I should reduce my working hours because that seemed to be “the norm”.
And whilst whether you work or not when you’re chronically ill really doesn’t matter – you are your own person and no one should comment on what you do – I have faced a fair amount of judgement from a variety of people because of the fact I work.
- Being seen to work has meant my pain has been automatically minimised – “the pain can’t be that bad if you’re able to go to work”
- The fact I don’t always take sick days when my pain is really bad, or my symptoms are really flaring, means the symptoms I get from my conditions are always put below other peoples
- Arranging my appointment around work (e.g. a same-day appointment) often means GPs won’t take my problem seriously
- I have a constant argument with *some* GPs about my pain relief. I can’t take the strong stuff when I’m working due to the side effects, so then I am told to not go to work, but when I reply with how I want to keep working because it’s a good distraction, stronger pain relief is then not advised because my pain “can’t be that much of a problem” if I can work
- No one sees how bad the pain is, because I constantly have a “game face” on for work
- People ask me why I am taking pain relief, or if I am still needing them
- People can’t seem to understand the severity of my conditions when they see me bouncing back to work
- I have found *some* people in the support communities I am a part of tell me to stop working, because then I’ll be taken seriously
- On the other hand, I’ve faced almost “discrimination” from the support communities I am a part of – my opinions or problems are not always considered to be important because “there are others whose lives are really effected”.
- I am asked over and over again at consultations about my work status – it’s almost like the consultant or healthcare professional I am seeing doesn’t quite believe me.
The point is, as we reach the end of Chronic Pain Awareness month, it should be that people in the outside world realise that chronic pain affects anyone and everyone, no matter your employment status, and it effects us each differently.
Chronic Pain Awareness month is about raising awareness and showing people what it is really like to live with something as distressing as chronic pain.