Being an advocate for any cause is hard! Don’t let anyone tell you differently.
Its putting yourself out there emotionally, physically and intellectually. AND… It means getting some negative, hateful and cruel comments.
You have to take the backlash from people with an axe to grind and ALSO enduring hearing painful stories and feeling and hurting for people all over the world. I hurt for all those people fighting pain, symptoms and isolation…
There are very little rewards for effort too, apart from the selfless reward that you can feel for doing your best and trying to help more people than you ‘offend’ or ‘upset’. You can also be labelled and judged by anyone and everyone. Another ‘perk’ of putting yourself out there.
During my former career as a Manager and Project Lead, I learned early in life that you cannot please everyone, so don’t even try. Not everyone will appreciate what you do and your efforts and the only thing you ever hope to achieve is to be true to yourself and follow your heart. Life will teach you this lesson over and over again and test you every step of the way. I dealt with multinational companies and multimillion dollar issues and projects all over the world, and I had to keep my resolve and integrity. They were truly priceless and learning experiences.
I also receive the odd message criticizing my work and attacking me personally which can make me question “why do I even bother?”… After all, I was getting paid good money for abuse when I was a manager. Today I am paid nothing for all I go through.
Why do I put myself out there? Why do I ‘try’ to help others and spread awareness for diseases when I could choose to spend my time devoted entirely to my own joy and happiness? Wouldn’t looking after myself be far easier than trying to write blogs with aching, shaking and painful hands? Of course it would be. So why do it?
Why go through all the trouble of trying to establish support groups for all the hurting, depressed and lonely sufferers out there only to be sent derogatory messages from some disgruntled people who don’t even know me? It would be easier not to put myself out there and spend my time pursuing my own pleasure and joy… and when I have so many health challenges I would probably be far better off personally if I concentrated solely on myself.
Why go to all the trouble of trying to get a charity established to raise funds for research and support fighters and sufferers, when there are those who will NEVER appreciate the work and efforts I go to and even attack me despite the struggles I go to and the symptoms I battle. So why do it? … because I guess that is who I am and that is my nature.
I try to do more good than harm. I try to help when I can. I care about the plight of many Autoimmune sufferers even if they never appreciate it or even criticize me for it.
I have learned that not everyone in life will like me and I am not meant to be everyone’s ‘cup of tea’, even if I were sick or not. I have learned that this is OK and so I don’t TRY to be everyone’s ‘cup of tea’.
Not everyone shares my opinions and views on life but it should NEVER stop me from having my own opinions and expressing them. It is what makes us truly us. It’s something that I cherish.
My years of living, working and blogging has also taught me a very precious and important skill… resilience! After the initial shock and blow of negative comments, attacks or criticisms I have learned to dig deep and remember how to brush myself off and move on. Resilience is truly an art and a survival technique in this life. I am glad I have been learning this and I hope to continue to learn and grow; despite what the world throws my way.
Again, why do I do it?
Well… after years of sitting in many different support groups and hearing a lot of topics, issues, painful situations and emotions being shared I wanted to do something to make a difference. I wanted to do something to help all those who needed support. I wanted to give back to this world, regardless of whatever disabilities I might have. That is who I truly am and what I am like.
So I started support groups to try and help people improve the quality of their lives with illnesses and with the help of a wonderful team of people, who do so very much, we all do our best to help others. They are truly amazing people and we have made a real difference.
I then started writing and blogging to advocate, educate and let others know they are not alone. I started being invited to admin and write various articles and teaming up with national and global groups to do whatever I can to help. And I am glad I have because I have met more wonderful people than ‘haters’.
During my lifetime I have given my time and efforts to aid animals causes, rescue animals, volunteer with handicapped people, aged people and victims of natural disasters. Why? Because I truly think it helps and is rewarding in a deeply personal way. Its EASY to criticize others, its a lot harder to help them.
What do I get for the advocacy work, blogging, charity work and support groups? Nothing. Not a penny. It has all been a labor of love. However the people I have had the chance to meet and the bonds that I have made have been truly priceless… It is hard to put words to how grateful I am for this and it far outweighs any negative comments I have gotten.
Also, the supportive, thankful, kind, encouraging and appreciative feedback means FAR more to me than any negative thing I have had thrown at me… I once told another sufferer that if all I ever achieved is making life a little better for ONE person, than it would have all been worth it. This is truly how I feel at the heart of it all, but that can really be tested sometimes.
Those people who really know me, know who I am and where my heart and motives lie. So when someone who doesn’t know me writes something, I remind myself who they are and what their opinions really mean to me in the bigger picture.
So… will I continue to work tirelessly and try and help others and raise funds for sufferers? Truthfully I don’t know. Sometimes I ask myself whether it really is worth all the pain, all the effort and the money – it costs money to set up a blog site, charity, and do proof of concepts for products.
I think it will be a question of continuing for as long as I feel it is beneficial (for others AND ME) and whether it is is more helpful than harmful (for others AND ME).
I want to close by thanking ALL those who have enjoyed, supported and appreciated what I have done and to all those wonderful friendships I have made since starting this journey, you have been amazing and if the ‘price’ for meeting all of you is putting up with the odd negative, rude or angry comments, it has been completely worth it!