Dysauto – what? Dysautonomia – what’s that?
You explain some of the symptoms you experience and the ‘light-bulb’ of your friend’s mind gradually gets brighter as you see their understanding of your condition expand.
I picked Dysautonomia because that’s what I suffer from but there are many illnesses with ‘funny’ names and various initials that people just don’t ‘get’.
They know what ‘cancer’ means or ‘dementia’, ‘diabetes’, and other more common illnesses and this is a great thing. Greater awareness of these conditions means greater understanding, support, and empathy.
However, it’s quite possible you’re suffering from one of the more obscure illnesses that people don’t really understand. There’s not that same awareness, support, or treatment options for you.
Wouldn’t it be great if the general public had a better understanding of what you deal with on a daily basis as well as the medical profession being able to provide the best treatment possible rather than finding yourself falling through the cracks because they don’t know much themselves?
You may be thinking that this would never happen. It’s just a pipe dream. Is it?
Do you remember the ALS ice-bucket challenge that went viral in 2014? In just two months, that challenge raised $115m (£87.7m) for ALS research in the US and has since funded 6 research projects. Not only that, but now the general public has a greater awareness and understanding of ALS.
So, granted, that is a ‘special case’ but it proves it can be done.
You may not be aware of this but today, September 5th 2016, is International Day of Charity. So I want to encourage you to look into the charity that represents your illness. Get a better idea of who ‘represents’ you and what they’re already doing.
Is there something you can do to help them? You may not have the funds to donate or the physical ability to do much but what CAN you do to raise awareness of your charity so that they receive the financial support needed to increase awareness and treatment options for you and all those suffering with your condition?
Following are some suggestions you may want to consider:
Find your charity
Learn more about your condition
You have probably already done a lot of research but keep learning because new research, discoveries, etc. are happening all the time.
Follow your charity on social media to keep up to date with the latest information.
Consider writing about your story
Maybe you want to start your own blog or write guest posts for sites like this one.
Share helpful resources
Some charities have helpful resources that you can share with others to help them understand what you’re going through better – you can share these with your family, friends, and employers – and anyone else who may be interested! Consider leaving leaflets in places such as your doctor’s office (with permission, of course).
Volunteer your services
If you’re up to it, maybe you can volunteer your services in some way to the charity.
Participate in, or plan events, to raise awareness in your area
You could do this by hosting an educational event where those who attend learn something useful to their own lives while also learning about your issues. This can also work for social events.
Consider whether you can donate to your charity
Whether you can personally or not, do you know of others who could? What about your company or the company your spouse works for? People are generally more willing to support a cause which is more personal to them – so if you, as a friend or employee, make the suggestion, you may receive a positive response (especially when companies are looking for charities to support at the end of the year!).
Tack your story onto an existing news story. By providing reporters with a story they can use to update breaking news on the following day, your story becomes the second paragraph of the story on the second day.
Share tips and info on social media
Don’t overdo it and gain a reputation for being annoying but dripping information about your condition into your timeline or newsfeed will subconsciously raise awareness among your friends and those who are particularly interested will learn more.
Maybe someone will come up with a ‘viral’ way to promote your charity (and, in so doing, raise awareness, understanding, and funding). That would be fabulous!
However, even if that never happens, by stepping up and promoting your charity, you will be making a difference in your area and you never know who you might influence who can influence many others.
There are many illnesses that are more common than ALS but people still don’t know much about them. Do your part, however big or small, to help your charity get more attention.
Your influence could make a big difference in increasing awareness and understanding of what you go through and additional funding may provide a more successful treatment or cure.
Think that you won’t be able to make much of a difference? You can – if you want to…. Do you?[/vc_column_text][/vc_column][/vc_row]