A life without sitting: Living with coccydynia (tailbone pain)




Two years ago I was working as a clinical psychologist - a job which involves a lot of sitting with intense concentration. It was a job I loved. Then completely out of the blue I developed some odd colorectal problems with pain on sitting. Over a three-month period the pain element escalated to the point that I could no longer sit for more than 40 minutes without excruciating disabling pain. My employers did everything they could to support me, trying different options like a specialised chair and a sit-stand workstation. But even with these adaptations it was obvious I simply couldn't fulfil my work duties and I was forced to retire.

I spent a year being investigated by a variety of specialists (spinal, colorectal and gynaecological) and had a number of operations, all to no avail. My coccyx (which I broke 40 years ago and is fused at right angles pointing into my body) seems to be a victim of age - my body just can't compensate any more for the abnormality. No doubt my job didn't help as it was so sedentary and the fact that I was a bit of a 'sofa-slug' when at home.

I am now starting a new phase of my life, one without sitting! It's quite challenging - the rejoinder of any social situation is 'have a seat', 'take a pew', 'take the weight off your feet', 'sit your arse down'. And finding a job that doesn't involve either prolonged sitting or standing still for long periods (more than 20 minutes in my case) or lifting weights repetitively (my lower back is seriously affected by the dysfunction in the pelvic muscles that attach to the coccyx) is near impossible. Having a pretty constant background level of pain is a challenge as well - my memory is pretty shot, I can't multi-task and generally I feel like a bit of a dunce.

However, I do have a life and these are some of the things that help me:

  • Connection - having people I love and who love me has been the most important part of my adaptation. I have also been taking time to reconnect with people I hadn't seen or spoken to properly in years. These connections help rebuild a sense of community, purpose and belonging that was fed by my work life previously.
  • Not being ashamed - I simply don't have the time or energy to get caught in a spiral of shame. If the pain is bad I walk like I'm drunk - so what! If the pain is high I might even struggle to figure out what 40p is from the change in my purse - so what!
  • Not battering the why - if I'm on a 'why spiral' (Why me? Why is this happening? Why is life so unfair?) then I know my mood is dropping and I simply stop. There are times when it's useful to ask why and search for answers, but it is not when my pain level is high (can't think straight anyway and likely to descend into maudlin self-pity) or at 2 am in the morning! If I get stuck in this at unhelpful times I write it all down and put a plan in place for when I'm going to do a bit more research, find people to answer questions.
  • Knowing pain is simply pain - pain isn't going to kill me. Worrying about the pain might! Pain, to me, is just an experience, not a pleasant one, but one that I can bear. I consider myself very lucky that reclined rest reduces the pain level. I don't use any painkillers as the ones that work interfere too significantly with my sense of connection. If I had to choose I'd prefer to feel love than not feel pain.
  • Being creative - I am constantly on the lookout for handy adaptations. I have a reclining sun lounger that is very lightweight and rolls along. I can take this out to cafes, bars and parks and join in with friends without being awkwardly flat-out on the floor.
  • Keeping active - I go to Pilates, yoga and myofascial release classes and I walk on a regular basis. I don't let the pain dictate what I do - I do stuff anyway because otherwise I'd do pretty much nothing.
  • Having rest as an activity - whilst I do keep active I am also allowed to rest without guilt. On the worst days I will go to bed and stay there. Every day has to be paced. If I go to the gym I can't also do cleaning; if I'm going out in the evening I must rest most of the afternoon.
  • Letting myself grieve but not giving up on hope - there are times when I still curl up and cry and feel very bitterly sorry for myself and that is fine. I am still working to let go of the life and status I had before - I can't predict when it will hit me, so I have cried on buses, in public toilets, in hospital corridors, in shops, in fact everywhere…I don't like it, it's not dignified, but it is just an emotional pressure valve and must not be shut off. So, I let myself grieve but I also don't get lost in the grief and give up hope that I can find a compromise with my coccyx and get a good quality of life.

At this point in time I am not having any specific treatments, other than physio for my lower back problems (my sacral joints are under a lot of pressure through compensating). This is my choice for now as I don't want to be on a surgical pathway. But in a year's time I will review this decision and perhaps consider the relatively limited options available. In the meantime the life I have created without sitting is not that bad and in many ways I'm a damn sight healthier than I was before!

For further support and information about living with coccydynia, visit the Facebook Coccyx Support group and coccyx.org