A gentle reminder

Of late, I have realized the possible effect of support groups to my emotional well-being. No doubt, it's always encouraging to hear great stories of people surviving and thriving amidst this disease, and I would feel all happy and hopeful that I too will be able to recover with few problems in the future.

However, not all stories from moyamoya patients are success stories, and I would find myself absorbing fear, anxiety and the sense of helplessness of those who have gone for numerous surgeries but yet are still struggling to live "normally".

Don't get me wrong, i think support groups are a great source of social support. But a friend of mine had very wisely reminded me that sharing our own life stories is good for people to be able to relate with you... but be aware that everyone has their own life experiences, whether good or bad, which is unique to them. We may be suffering from the same disease... but our experience of this disease may have similarities or may be vastly different. Hence, it is important that we do not take on or expect other people's life experiences to be exactly the same as ours. We may be on a similar journey to survive through this condition, but we may face different challenges or we may take different paths to dealing with it.

So a reminder to myself was that I do have my own journey with this disease. As much as I may be able to understand or relate with other Moyamoya survivors, it may not be healthy to OVER relate. It's good to feel that there is some emotional connection with fellow survivors, but to be careful not to be TOO emotionally attached to another person's journey.

Keeping healthy/good emotional boundaries is important so you're less likely to get sucked into having expectations of being completely well or feeling overwhelmed that one would suffer multiple strokes. We may end up getting ahead of ourselves, worrying about things that may or may not happen in the future.

Something I'm attempting to learn is to just be present with my own experiences, be it good or bad. Don't be too hard on yourself and just try to take things one step at a time. 

It's not easy and I admit that I still struggle with this from time to time.

I understand the temptation to want to cling on to a wonderful success story and then firmly believe that we will have the same success story, but I've come to realize that that same expectaition may sometimes contribute to me feeling frustrated and anxious. I realize that when I allow myself to recognize my own journey instead of focusing so much on other people's experiences, I would be more at peace and more accepting that this is how things are going and to allow my life experiences to take its course that is unique to me.