• Scarlett Aylen

Do I tell them? Do I not?

I have recently wondered, what would happen if I didn’t tell anyone about my back and downplayed it. So I took a group trip as an opportunity to see what would happen.

I thought that it would be great, I wouldn’t have to think about my back, the things it stops me doing or explain anything to anyone.. I could almost be normal. However it didn’t quite go the way I planned and highlights how important it is to be open and comfortable in your own skin.

At first I just said I had a bad back, until someone said ‘me too’ and I awkwardly stood there wondering whether to tell them about the significance of my ‘bad back’. I stupidly downplayed it again to other people, to the extent where when I got too tired to go out on one of the activities or wanted to lay in bed, I was told that the rest of the group thought I was being ‘antisocial’. I guess that is what comes with a chronic condition that is complicated and difficult to understand.

It has been 11 of the 14 nights I have spent with these people and I have managed to wear a bikini, but not comfortably, nor have I mentioned a 22 inch scar to anybody. I have realised that when I do tell people I spend time with about things like the scar on my back, I don’t worry as much because they are usually reassuring.

It is really hard talking to people when I am doing activities that I need to be careful about. For example, we worked with the horses on the game reserve, and I was heavily questioned on my ability to ride. “You can’t do more than walking can you” I responded “well, yes I can do whatever I like”, “but how can you do that with your back”. I don’t particularly want to explain to people the ins and outs of what I can, can’t and choose not to do, but I also don’t want to stand there and pour out my life story to someone when I spent my time with this group trying to be more interested in other people than sharing things about myself.

Above are two photos that I did not like. One of my back, where it looks odd and the other of one of my arms which I can’t lift as high as the other.

There have been no benefits, I was self conscious about a photo that was taken of me because I thought my back looked weird, but had nobody to tell. I was in pain, but had nobody to tell. I am suddenly being recommended not to do certain activities ‘because of my back’ being bad, but I don’t want to explain that sometimes I would rather do something even if it is ridiculously difficult and painful for me, so I can have a sense of achievement, or alternatively have a great time with no pain.

I guess I have now officially learnt that I feel better in myself and with the people I surround myself if I am open and explanatory about my life. I have also decided never again to try and pretend to be someone I am not and hide things because it simply just doesn’t work!


Recovering Confidence After Scoliosis surgery is a new not for profit organisation, founded by Scarlett Aylen in 2018.

 2018 Recovering Confidence After Scoliosis Surgery RCASs. Scarlett Aylen. The United Kingdom.