I know that my posts can sometimes seem quite dark in the sense that I feel the need to raise awareness of what PANDAS / PANS can be like at its worst, as that is what many people with the conditions go through, and that sort of awareness gets people the support they need. However, today I am going to write something more on the lighter side. This is how PANDAS / PANS has helped me, and the positives of it.
Living with PANDAS / PANS has allowed me to appreciate the moment and to not take anything for granted. This doesn’t mean that I don’t have days where I feel a bit ‘meh’ or don’t want to do something to ‘cease the day’, but it means that I know how things can change overnight as I have experienced it, so I do not delay things and try to live my dreams and do all that I can to make a difference. I also remember the importance of having fun. It can be difficult to have fun when in a PANS / PANDAS flare as it can cause extreme OCD and anxiety along with deep depression, so when things are going well I know the importance of doing the things I love to do and I know that doing something just because it makes me happy (such as running in the rain, skipping etc) is a valid reason to do something. I believe that gives me a sort of spark at times as I try to live life to the fullest when I can.
It has allowed me to see the ‘little things’ as miracles. Things like being in college seem like a miracle to me because when I was around 15 years old my school was talking about sending me to a medical pupil referral unit as they did not know how they would meet my needs. So not needing to go there and to be able to move on to do the college course that I am doing was truly something magical to me. I also know that I used to be unable to dress myself and I used to struggle to read properly, write properly and do things that others take for granted. This doesn’t mean that I always feel pure joy when I dress myself or anything, but if I am having a ‘bad’ day then I can remind myself that I used to think I would spend my whole life unable to do anything so that really puts things into perspective.
Another incredible thing about having PANDAS / PANS is the immense gratitude and joy you feel once things get better. I do not wish to offer false hope, but things really can get better - sometimes it just takes time. Yes, you may have residual symptoms, but it is possible that your symptoms can improve so much that you end up in a better state than you ever thought you could be. Even if things seem really bleak now, it does not mean that they will be like this forever, it gets better. When I was coming out of my flare which started almost a year ago now, I had never felt such an intense feeling of gratitude wash over me. I remember standing in the garden listening to a song with lyrics about being lucky to be alive and that song just triggered a cascade of emotions. I had been through a lot and now it was getting so much better - it felt magical to say the least. During that flare I believed I was going to die, of course I wasn’t going to but that is just what I thought at the time. So being alive and coming out of the flare gave me a strong appreciation of life and made me decide to use my healthy state to help others and to raise awareness so that those who are still in the worst of it can get their voices heard. I remember crying so many tears of gratitude once the worst of it was over, I was alive and I was well, not only that but I had transformed as a person.
When you get to the point where you struggle so much that you cannot look after yourself or do the things you were once good at, it is very humbling. It allows you to become a little less judgemental as you know what it is like to be at so called ‘rock bottom’. Living with something like PANDAS / PANS can give you a lot of empathy and compassion for others, and that is a beautiful thing. My last flare transformed me completely as a person, and for that I am eternally grateful. Sometimes when things seem like they are crashing down and things start looking like they are getting worse, it is possible that it could be leading you up a better life path - one where you become the embodiment of your highest self and can use your experiences to help others.
I like to think the struggles I have been through are worthwhile as they have allowed me to help others in various ways and have a YouTube Channel and blog, so some good things have definitely come out of my struggles. I have also made such wonderful friends in the PANDAS / PANS and tic disorder community and some of these people have changed my life beyond measure and I am not sure if I could say thank you to these people enough. I look forward to the time when I can see my friends in the PANDAS / PANS community get better, as many people are still struggling.
I feel that I am very lucky in my personal journey as my PANDAS / PANS has been pretty easily treatable, and yes I have spent years of my life disabled by it and yes I have experienced countless neurological and psychiatric symptoms… but now I wouldn’t change it for the world. My journey is what has made me who I am and it has shaped my views and perspectives, it has drawn me towards my passions and has allowed me to be open minded, resilient and persistent. I found that when things get tough, instead of thinking that it is a tragedy, or that it should not happen, it can help to view it as an opportunity to grow and transform. Having that mindset got me through the worst of it as I just knew it could open me up to new avenues in life and could make me stronger and wiser, and it did.
The truth is that almost everyone goes through something that almost ‘breaks’ them or that brings them down to the point where they don’t know what they are going to do anymore. So many people live with things like depression, anxiety, OCD, chronic illness etc or have been through traumatic or difficult life experiences. It is important to remember this as it is very humbling and reminds you that we all need each other. Connecting with others can make all the difference and we have to be there for one another where we can. Thankfully my experiences have shown me this as I have had people on my journey who have supported me so much and it is incredible, everyone should have a support network where they can talk about how they feel and be listened to.
Yes, PANDAS / PANS is hellish and I would never wish it upon anyone, but I am so grateful that I have been able to learn from my experiences and it has actually been more of a gift than a curse. Of course, if you are in the worst of it still then I do not expect you to feel that it is a gift. I remember asking my mum why I was being punished by God and I then became atheist as I did not believe a God could put someone through all of this, but over time I began to see how my experiences have helped me grow and have been completely worthwhile. I am grateful for my journey - but coming to that level of acceptance takes time.
