Last Thursday I was invited on a popular Maltese TV programme ‘Ilsien in-Nisa’. One of the presenters, Claire Agius Ordway, is a fellow athlete and has supported me ever since I launched this blog.
Still, when she asked if I would be on the programme, my first instinct was to say no. Being on TV is definitely not my thing.
But she assured me that she and the other two presenters would make me feel comfortable. The three of them are lovely and they really did and it was actually good fun chatting with them (apart from those few moments where I remembered we were being filmed :) ).
Still I’d choose writing over speaking on TV any day. I find that when I’m writing I can say exactly what I want to say without leaving anything out. Whereas after the programme, I kept thinking about things I wished I had said but didn’t.
Wishing I had explained why I took selfies when I was chronically ill
And one of the things I wished I had explained was why I took selfies while I was ill. I recently shared a couple of these selfies on social media to show how my appearance changed while I was chronically ill and now that I’ve recovered.
One of the presenters remarked about the fact that although I was ill, I still took selfies, even in my mask. She said this in a very positive way and someone else said that it’s good that I did because I documented my journey that way.
But still I've wanted to explain why I took these selfies for some time but didn’t actually manage to explain on the programme as time was coming to an end. (Seeing the programme coordinator waving her hands at us with a board in her hand saying something like “Move on to adverts” panicked me – even if all three lovely presenters calmly kept chatting away).
So I decided that since I didn’t say it on TV, I would explain it here.
Deciding to start a blog in 2015 but not having the energy to actually start it
I started my blog in May 2016, but I had decided that I was going to start a blog about a year before, about 4 months after I became chronically ill.
Of course I didn’t know then that things were going to get much worse (short version of my story here). And I definitely had no idea that I would ever get my life back completely through DNRS and be able to go anywhere and eat anything again.
So the plan for the blog was entirely different. It was actually going to be a blog about how to cope with severe food intolerances.
Because things kept getting worse and because my chronic fatigue worsened to the point that some weeks I couldn’t work more than 6 hours, the blog was just one of the things I had to put on hold. I didn’t even have the energy for the most basic things, let alone for setting a blog up.
Knowing how difficult it is to suffer from an invisible illness
But the blog was at the back of my mind much of the time. My ideas for it evolved constantly but the main idea was always that I wanted to help people in situations similar to mine.
I learned how difficult it is to go from one doctor to another only to be told that they don’t know what’s happening.
And how difficult it is to remember the person you were before you became ill and the things you used to love to do. But to see all that being taken away from you and to have to accept that this is your life now. A life of avoidance, isolation and restriction.
How difficult to feel that you might not be believed. To sometimes doubt whether what you’re going through is actually an illness or perhaps just something you’re imagining.
I knew what those really dark moments felt like where I shocked myself by actually thinking that dying would be a better option.
Knowing that a picture can speak a thousand words and that not everyone has the support I had
And I knew there were people passing through similar situations. People who unlike me perhaps didn’t have as much support from loved ones.
So I wanted to find a way to help them. Even if just by showing them that they’re not alone.
And as many people say, a picture can speak a thousand words.
I could see myself changing as my health deteriorated.
But the funny thing about invisible illnesses is that to most people you don’t look ill.
But most people don’t see you at your worst. They don’t see you when you’re passed out on the sofa, barely able to talk or move. They don’t see you because you’re too ill to see people then. You cancel all your plans.
You also don’t take photos at your worst. I obviously have some photos with my family and friends during the months when I was chronically ill. But no photos of the times when I cancelled plans with them because I was too ill to meet them.
Thinking that pictures of me at my worst might help others realise that they’re not alone
And I knew that it might help some people to realise that they’re not alone if they could see photos of me at my worst.
I wasn’t sure if I’d ever decide to share photos of myself looking so bad. I was even embarrassed to ask my husband or family to take them for me. But I wanted to have them in case I ever did.
In case someone might then see the photo and relate to it. In case it could help that person or in case it could help her sister, mother or friend.
So that’s why I took selfies while I was chronically ill. Not because I like selfies. Definitely not because I thought I looked good. And also not because I thought it could be some sort of ticket to fame. I’ve actually always preferred to be unnoticed as much as possible.
But because I wanted to raise awareness about these mysterious, chronic conditions that affect so many people’s lives and to show others who may be feeling as desperate as I often felt that they’re not alone.