At the time of publishing this, it’s Rare Disease Day. This is a chance to talk about not just the rare conditions we have, but also aspects of our lives with having these conditions. In the past I talked about accessing treatment for common illnesses. This year I want to talk about confidence.

When you’re someone with a rare condition, you are probably learning about yourself when you’re younger. A lot of people will ask questions but, quite honestly, it’s not until you’re older when you know all the answers (and even then not all of them). You also may have people fussing over you or medical professionals oohing and aahing at your medical notes which makes you feel overwhelmed. If your rare condition impacts on the way you look, you may deal with constant stares, this can also affect your confidence. As a young person, you may feel self-conscious and feel torn between wondering why people are staring, to expecting stares whenever you go out. It’s weird.

At school, I would want the ground to swallow me up if I had to do any form of public speaking or reading aloud in class. It probably honestly took me 18 years to grow properly in confidence. So in this post, I’m going to talk about the small steps I took, to growing into a young confident(ish) disabled woman.

Network with other disabled people

The best thing I have done throughout my life is to meet other disabled people. I think especially as someone with a rare condition it can be really tiring constantly explaining things. The best feeling is going to a Brittle Bone Society AGM and feeling like I’m with a second family.
Even when I started university, my eyes opened to other impairments and disabilities and I learned so much more about the world and didn’t feel like I was “rare” anymore. But remember, just because your’re disabled, it doesn’t mean you’re going to agree and get on – but when you do find that friend who you can connect with and just be 100% you, it’s amazing.

Find your style

This sounds daft but, finding my style as a disabled person really took time. First of all, you have to work out what suits your body when it’s hard to know what standard sizes suit you. Then it took me ages to feel confident to experiment with style. I specifically remember being a teenager and feeling mortified when I put a top on that showed my shoulders. In fact, I burst into tears and told my mum I wanted to take it off STRAIGHT AWAY. When I look back now I think I cringed that people thought I was making an effort. I didn’t want people to say to me in that patronising tone “Aww don’t you look adorable!!” when actually, I learned it’s ok to make an effort, to look attractive and get compliments. I now know my style, and it’s actually to be bold, wear bright colours and stand out EVEN more. Someone once said I dress like a ‘mini Liz MacDonald’ from Coronation Street and honestly – I’ll take that.

Practice answering ignorance

Now, if you’ve followed my blog for a while, you’ll know that one of the things I moan about a lot of people’s attitudes and ignorance. I think a huge reason as to why I was so not confident as a child was all of the ignorant comments people say and stereotypical behaviour I would receive. A classic example is people talking to the person I’m with instead of me. This slowly engrains into you and you start to mold into that norm. You rely on your friend taking the lead so you don’t speak for yourself. So it took me AGES to realise I had to challenge this. Now, I will say “speak to me please, I’m asking the question”. If you’re someone who feels like you need to build your confidence, I would say practice on strangers. This is a great way to practice your standard replies. Test out different answers. Think about it, you’ll never meet them again. I do this regularly with taxi drivers and I’ve pretty much got an answer for every ignorant question. Even “do you crawl then or…”

So on a day like today, I’m reminding fellow disabled people, especially young women to keep building yourselves up. Sometimes you may have doubts, but keep going. Disability and identity are important, but remember to be you first and foremost, even if that means dressing like Liz MacDonald from Corrie.

Have you felt the same? I’d love to know your thoughts! Let me know on Twitter or Facebook or contact me on here!

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