Reflections

A fellow TBM friend put a post on Facebook last week, about how much her appearance had changed since her diagnosis. A before and after if you will. What followed was an outpouring across our little community on her post about how much aesthetically we feel we have been hit by this illness.

The physical impact is obvious but in terms of how we look, how we present ourselves, even the impact the medication we need has changed how we feel we look to the outside world.

I have really pondered on what was said and it has kept coming back to me over the course of the week for many different reasons. About the things that many of the TBM sufferers say they felt about themselves (you are all absolute warriors just in case you are doubting yourself). But also, that of all the things we have to worry about this should be small, but actually feels quite big, it is our outward presentation to the world. Many of us struggle, we don’t recognise who we are in the mirror. The change we see (even if it isn’t obvious to the outside world) is just another way we feel this illness has stripped part of us away.

In the main TBM is an invisible illness, many sufferers look fairly well in our outward appearance, and it’s not until you add the mobility aids, breathing machines and other supports we need to certain tasks and get about that the illness becomes more obvious.

This brings me back to the interesting before and after scenario. Certainly it
rings true for me and made me face an uncomfortable truth. Generally, unless it’s a flattering selfie with a heavy filter, I dislike looking at pictures of myself. This recent bout of croup has made me feel like I look like I have been blown up with a bicycle pump thanks to the tons of steroids I needed to take. Looking at myself some days makes me feel tearful (steroids really are the gift that keeps on giving). Those are the days I don’t recognise the tired, bloated person staring back at me. It doesn’t compute with the version of myself I hold, the one that still exists in my head. The ‘before’ picture.

At his point I want to say that feeling this way is not unusual for those just with health problems. I am fairly sure there are many people who have periods of time in their life where they don’t recognise who they are. Be it the ageing process, a busy family life or changes in their bodies. This is of course no different to that, it is just illness related. I am fairly sure many are going through similar feelings and experiences for many different reasons.

Certainly, the consensus on this specific post was we are all beautiful and brave in our own ways despite what we go through and that it is natural to still feel sorrow for that person, that physical representation of who we were, the life we had. The before. For me I miss that independent, confident person that shone through, and for me I think that’s what I no longer see when I look at myself in pictures. I feel I look uncomfortable, like I can see the struggle in my face, the tiredness, the medication effects.

Maybe I look the same, maybe a relative stranger or even those close to me see no difference but it’s how you personally feel in yourself that matters. This is by no means a fishing for compliments post, or a woe is me one, in fact it’s just another element in the way people with chronic diseases feel they are affected. It was certainly something that rings very true for me and I felt compelled to write something based on my own personal journey.

The tiredness must have finally lifted and I must be feeling more of my old self again, it has been such a long time since my last post and I must apologise for that. So thank you for reading, thank you to my friend for your inspiring post that got me thinking and broke the blog drought!!

Until next time.