I recently started a Facebook page that is called, “I am AS Positive”. It was something I had been considering for some time but was a little tentative about because there are times when being told to “remain positive” is like having someone poke a rusty nail into your eyeball, pull it out, stomp on it, and… well you get the point – worse than nails on a chalkboard. So I asked some other AS bloggers and advocates their opinion because they connect so closely with the community and are very positive people themselves. Their collective answer was a resounding yes, and we all set up the page together and a group of us are co-admins on it.
We take a pledge to remain positive – a pledge – because it can take that much to not go into all the things that are so horrible – to go negative. We all agree that there is a difference between sharing difficulties and venting and being someone who suffers beyond where you need to suffer; that place is self-pity mixed with martyr sprinkled with one-upmanship. It isn’t pretty and it is tiring for the people who you need to be your support system. For so many of us that is a place we will not go and if we do – we won’t splash it all over other peoples’ lives and on the internet – those moments happen with our close circles in private moments. There is a way to talk about our lives to raise awareness but when it becomes what I’ve described above – it helps no one.
Today I was about to share a graphic about never giving up and I started thinking that I needed to talk about why sharing positive quotes and stories is so important – and how sometimes the cheerleading from the proverbial Facebook peanut gallery is just flat out not what you want to hear. Sometimes we have to go to a dark place – and sometimes we have no choice in it – we’re there no matter how many affirmations or mantras we shout to the rooftops. There are some topics about living with a disease like AS that can be unbelievably difficult to verbalize and share and even more difficult to live with. They need to be discussed but they don’t need to be used as a way to convince the world that we have it bad.
Saying “never give up” can be difficult to hear when the things you are battling are pain and illness. We say these “positive” things to remind one another that sometimes life is ok – it doesn’t negate the times that it is horrendous. For some – especially people who are newly diagnosed or for people who have friends and family who refuse to understand the disease you have – there is a worry that if we show you our ok times – that you will think we must be fine and it couldn’t be THAT bad. Guess what – we are damn sure going to take hold of a moment of joy and happiness – because those moments are like air – they keep us going. No one should dare deny anyone a happy moment and judge what it is we endure because we “look fine” or were able to do x, y, or z on a given day. We work to keep positive because it helps us manage & grasp hold… and sometimes saying positive things is how we get to the place where we can actually thrive for more and more moments of our lives. Pain & depression are just a couple of the “things” you can’t understand if you don’t live with chronic pain that seems never ending. “Things” can get beyond horrible to the point of desperation – living by fiercely hanging on minute by minute – and sometimes even a minute more of hanging on feels impossible – feels never ending. Getting through those moments are where our battles are most fiercely waged – within our minds that can’t see how to endure for one more second.
We share bits of this difficulty with others in hopes of at least getting some understanding that dang it – life is difficult for us! But, what we really want and need is empathy and acknowledgement. If you know someone with AS or any kind of chronic pain or illness – if you are paying attention, you can see when they aren’t doing well. For some they show anger and lash out at something, for others it is self deprecation and for some it is withdrawing or turning inward, quiet. We cannot find words that will make you understand – most days you choose to dismiss us even if we could explain how bad it is – why is that? Are you afraid it could happen to you or are you convinced that it never would?
Please take a moment to hear this – just one little moment… guess what is the easiest thing you can do for us that will mean so much. Simply say you are sorry that we are dealing with so much and take 5 minutes out of your day to listen. At that moment please – do not compare what we are going through with someone else. We know there are people dealing with things worse. At the times we are in despair we just need a moment of empathy, love, and acknowledgement.
That is it.
That is what will help.
If you have AS and are having one of these times and cannot find someone who will do this for you – remember – we have a big wonderful community of people who understand and will be there to listen and get you through these horribly bad moments. Reach out when you get to this place – please.
For anyone reading this who knows someone or loves someone with a chronic and painful disease. Thank you from the bottom of my heart for taking a moment to hear me out. I have hope that you will see our positivity as our badge of courage instead of proof of the fact that it can’t be that bad.
I am A.S. Positive!