It can be scary the idea of sharing your HD story, what should you share? What is to much? How can you protect yourself? Are you prepared with the questions and the attention that comes with it?
These are questions I ask myself and get asked all the time, and yes there are times I wish I could hide away, I wish things were a little more private. Days when I don't want to be asked why I haven't gotten tested yet or people who judge me for sharing to much of my life online. People who judge me for the things I have done over the years and decisions I have made.
These are the people and feelings I tend not to pay attention to, the feelings and people I pay attention to are those who reach out to me thanking me for sharing my story and making them feel less alone, people who don't speak about HD in their family let alone publicly but enjoy seeing my posts and a positive midset. People who want to share their story but are scared, or don't know where to start. These are the peoples who keep me going, These are the people who bring me joy, happiness and excitement!
I was recently asked in an interview have I helped people, have I influenced people to speak out more. Normally I brush this style of question to one side, because I don't boast about the work I do, I'm not very good at promoting myself I guess, but for the purpose of this interview I had to tell the truth.
I have had people reach out to me through Instagram and Facebook, people who are at all different stages, new to HD, known about it for years, carers, directly affected - I think I've met them all. They regulary reach out to me thanking me for my posts, and sharing my story, feeling less alone and learning something from what I share.
I know people who have started sharing their story because I share mine, I know people who have gotten more involved with their local HD charity or even the HDYO Ambassadors. I'm not telling you this for a pat on the back, I'm have a point and i promise im getting to it.
I share my story with one goal, and it's not 5 minutes of fame. I want to help people, I want to reduce the stigma, and raise awareness for HD amoung the community and general public. Its also alot of fun, I've met some amazing people over the years and had some pretty cool trips.
Here are some tips I have if you want to start sharing your story a little more public:
1. Figure out what you are comfortable sharing and what, at this point you are not. You can change your mind, but remember to do what you are comfortable with at each stage.
2. It's your story, you know it better than anyone so just talk, share and own it.
3. Prepare, if you are doing an interview or in person event, be prepared. Make notes so you don't get distracted and go off on a ramble (don't worry sometimes I still do) and PRATISE PRATISE PRATISE. - Yes it's your story and you know it, but that doesn't mean standing infront of faces won't put you off, so If you are comfortable and confident having practiced, it will help with the nerves.
5. Know your audience - who are you speaking to, is it kids, adults, the community, medical professionals. You may need to adapt your story or presentation to fit the audience. This is also a good time to mention, don't always assume people will know what you are talking about. If you need help with this, the HDYO website has age appropriate information which can help you.
6. Make it personal, you might be sharing your story as part of a fundraiser, by making it personal people will be more likely to donate simply asking for donations for a HD charity, people may not know what HD is or what the charity does. By sharing some of your story like who is affected, how they are affected, a simple definition of HD and some of the work the charity does will help people to understand and potentially donate.
7. Speak clearly, weather you are giving an interview or speaking at an event, try to tone down you accent (depending how strong it is) and cut out slang. I know your reading this thinking - that's rich Ashley, you have such a strong accent. I do try my best to use words which are not associated solely to Northern Ireland, and tone down my accent as sometimes my audience have been people where English is not their first language or they struggle with the Northern Ireland accent.
8. Get permission, I don't mean literally, we are all our own person, but for example, I am very much in the public eye for HD, and I do care that my brother is comfortable with that. I tell him what I'm doing regarding interviews or photos hoots, just so he is happy and if he has any questions. Legally Ryan could have stopped me sharing photos of dad, but he never would, he knew that I loved dad with all my heart, and before HD took over we always posted photos and shared our story. My brother is my biggest supporter- although I don't think he would admit it. Why I'm telling you this is because not all families will be the same, some are more comfortable talking about it than others, and thats okay. We all cope differently, some are more private than others. Talk to your loved ones and let them know what you are doing.
9. Don't give up! The first couple of times you probably will be nervous, that's okay, I still get nervous honestly! But the more you do it the more comfortable you get. I welcome every opportunity to speak now about HD, I love preparing my speech or making a presentation, even if I'm doing an interview I'll ask for the questions before hand so I can make rough notes. That way I won't forget anything in the heat of the moment, and will say everything I want to. Have you ever been speaking to someone, or in a job interview and afterwards you think 'dam, I didnt say this, or dam I didn't tell them that' - that's what you want to avoid.
10. Enjoy it!! Remind yourself that by speaking out you are helping others, you are making a difference! I always tell myself, I am not a scientist, I didnt even pass high-school science, but I have a voice and I can bluddy well use it for good!!
I truly feel that there are more and more people speaking out about HD sharing their story, and it absolutely warms my heart! Epically when I recieve beautiful messages saying I encouraged them. So please, if you feel like this is something you want to do, GO FOR IT!
I would welcome anyone to reach out to me on IG etc to chat more, ask advice or figure out how to get your first opportunity.