I have a twitter feed and a Facebook page, both called “Life With Sarcoidosis“. Unlike other feeds and pages dedicated to sarcoidosis, I do not constantly put up medical information about the disease because you can find that in a million and one blogs and sites. Instead I post sayings and links to articles that inspire, uplift and generally nourish the psyche rather than nourish the obsession with information about the disease. My philosophy is that the only healer is you, and the only way to heal yourself effectively is to be positive, and feed yourself emotionally and spiritually before you can even begin to touch the physical.
In the past couple of weeks my posts on both the Twitter feed and Facebook page have increased, as when ever I find something inspirational (I don't mean religiously so), I post it. I post about twenty items a day on average on both feeds, spaced out through out the day. I use an awesome free app called Hootsuite that let's me schedule post in advance, and it will send them out automatically dispersed through the day. I also have a daily e-paper called Life With Sarcoidosis Daily Review that recaps some of my tweets on sarcoidosis and pulmonary hypertension daily, along with other posts and articles about the disease from others in the Twitter community.
I received an email from a Facebook user the other day demanding that I stop posting “all this crap”, and just stick to what the page is supposed to be about – Sarcoidosis information. They also went on to say that I obviously have a lot if time to waste as I am posting “crap through out the entire f**king day.”
Admittedly, it pissed me off at first. Who the hell was this person to sit in judgement of me? But then, as I thought about it, they are in there right to complain. Having a blog, a Twitter feed and a Facebook page all open to the public does open me up to ridicule and criticism. I guess all we ever want to hear is the praise. Nobody wants to be told something negative.
As I thought about it more and more I thought that maybe this person did have a point. My feeds and blogs are entitled “Life With Sarcoidosis, and I suppose that to many people, they would expect that there will be information about sarcoidosis.
And then I thought about it some more, and I asked myself, who do I write my blog for? For me. It's just a venue for me to vent. No promises to anyone. The feeds and blog are really only about my life, living with a disease called sarcoidosis and the accompanying conditions it has brought on. And it is is MY blog and feeds. And they are all free. I have no obligation to anyone at all as to what information I put on them, so although that person may be entitled to their opinion, that's all it is, their opinion. And why should I change my way of doing things just because they don't like it?
To that woman that wrote me that scathing email, and chose to attack me personally (and with language like that, you sure as hell are not a lady), I don't have to change my format. I won't change my format. And if I choose to put up inspirational sayings, thoughts from Jesus, Buddha, my neighbor, or pictures of kittens, doggies, rabbits, or kangaroos, that is my business and my prerogative.
And to anyone that thinks my posts are “excessive” and not “sarcoidosis” enough, please, when on your twitter feed, Facebook page, or even this blog, it's simple. Just hit unfollow and unlike. It's a lot easier than writing me long, abusive emails.
Go in peace.