We all face challenges in life, some more than others, one of the challenges I have faced is living with PANDAS. When life gets tough, it can feel unfair. I understand because I have been there. I remember being 12 years old and asking my mum why God was punishing me, I didn't understand. However, now I know that those circumstances that caused me so much pain were never there to punish me….No. They were there to give me strength, align me with the right path in life and teach me some valuable life lessons. So, here are some of the lessons I have learnt from living with PANDAS/PANS.
1. I am not my thoughts. PANDAS/PANS often causes severe OCD, and for me this manifested as near-constant intrusive thoughts. This meant that most of my mind was not my own and I had to perform countless mental compulsions. I was watching my own mind, observing in terror, my mind wasn't my own anymore… but was it ever?
Having this experience with OCD allowed me to be the awareness behind my thoughts, I had a compulsion where I had to identify certain thoughts. Although this caused distress at the time, I now feel that it helped me develop mindfulness. I can now be the awareness behind my thoughts most of the time as I realise that thoughts are just electrical signals from the brain, they come into my awareness and then pass. This ability to take a step back from our thoughts is not necessary, but can help us learn more about ourselves and change unhealthy patterns.
2. There is more suffering in the world than most people think. This doesn't sound like a great lesson to learn, but it can be important in the sense of putting things into perspective and allowing us to develop empathy and a greater understanding of the world.
When I was experiencing the OCD and depressive symptoms that result from my condition, I had never felt anything like it before. It then made me think, so many people live day in day out with mental health struggles and so many people in the world face so much pain. It is heart-breaking. Realising all of this however, humbled me greatly. Everyone faces struggles and pain, and no one should be shamed for facing such difficulties. We are all in this together and we are here to help each other. Experiencing something like this allowed me to be more compassionate and empathetic to those around me, as so many people suffer, and something needs to be done to help these people.
3. We can use our experiences to help others, and to make our younger selves proud. One of the best things I have done with my experience is to use it to help others, make a difference, find my calling and follow it. We do not need to let our experiences go to waste; we can use them for something. Anything we can do to help matters, and I have learnt that when I am well, I can spend my time serving others and doing things to try and reduce the suffering in the world.
As well as this, if it is an experience that we had when we were younger, then we can use it to make our younger selves proud and I believe that it can give us a sense of satisfaction and make the struggles seem a lot more worthwhile. I am at the point in my life now where I can say that I feel that I have made my younger self proud.
4. Do not take anything for granted. With PANDAS / PANS, things can change very suddenly. People can develop OCD, tics, personality changes, food restrictions and more, often overnight. Experiencing this overnight onset for myself, multiple times, means that I try to make the most of every day where I can - as if this is my second, third, or forth chance at life.
When I was younger, I was disabled by my condition for 4 years and had no quality of life. Me and my family thought that I would spend my life like this. However, I am now 18 years old, and I am so much better than I ever thought I would be - I am functional… I am happy. This is more than I could have ever wished for. Things really do get better, and this allows me not to take anything for granted as I know how quickly things can change and I know what it is like to struggle to do 'basic' tasks. Everything seems like a miracle to me, and once difficult situations in life pass, everything seems a little more magical.
5. Do what is best for your wellbeing, no matter what your mind is telling you and no matter what anyone else may think - just do what is best for you.
Some context here, my OCD was convincing me that my intrusive thoughts would come true. This was made worse by me reading about the law of attraction, which is the idea that 'thoughts create reality'. For a while I thought that I had to keep learning about it and listening to people talk about it to be 'spiritual'... despite it having a negative impact on my mental health.
After some time, I realised that my wellbeing is more important. I took the step to set boundaries and say that I do not talk about this topic any longer as my recovery and wellbeing is more important. I stopped doing things that I thought I 'should' do, and I accepted myself as I am. This really helped my wellbeing, and I have learnt that being 'spiritual' has nothing to do with researching or agreeing with certain topics or having a specific belief system. It is about doing things out of love, doing what is best for you and knowing your worth. Therefore, this experience has helped me realise all of this and do what is best for me, whilst letting go of any dogma.
Another thing is that my PANDAS/PANS caused hyperactivity. I felt really ashamed of this at first as I felt like I needed to 'calm down' and 'go slower', but this was impossible for me at the time, and I did not want to do so as trying to caused me discomfort. I felt like the 'right thing' for me to do was to resist this hyperactivity, but this did not help at all. What helped was accepting myself as I am and letting my thoughts race, letting myself move around and letting myself go with the flow. Therefore, this experience has taught me to accept, and embrace, myself as I am and not try to 'change' due to what my mind is telling me. It has taught me that it is more important to be myself, than to be who I think I 'should' be.
6. You can adapt and find new ways of doing things and develop resilience. This is a really useful lesson to learn in life as you never know when things will change. PANDAS/PANS made it difficult for me to do certain things, but thankfully these sorts of situations allowed me to be creative and to find new ways of doing things that work for me, rather than giving up on what I want to do.
7.When someone is struggling, a simple act of kindness goes so far. I remember sitting on the ramp in the park next to my house and crying, I felt so overwhelmed and didn't know what was going on. This was the start of a PANDAS flare. After this, I walked over to the swings and I must have dropped something, as a girl came up to me and gave it back. This was a very simple thing, but I remember that it warmed my heart.
At the time as well, I opened up to friends about how confused I was and how overwhelmed I felt, and I was so lucky that they met me with kindness, empathy and compassion. It meant the world to me at the time - their kind words and the fact that they would check up on me. It was so very sweet and is something I will always be grateful for. This taught me how much kind words and gestures can mean to someone when they are going through tough times.
8,. It is important to be accepting of those who struggle to do daily tasks. Sometimes people who struggle to be productive may be judged as ‘lazy’ or ‘not trying hard enough’, but that is far from the truth. Living with PANDAS / PANS has helped me become less judgemental as I know what it is like to be unable to do daily tasks and to have brain fog so heavy that you cannot focus on anything. Instead of judging people as lazy or thinking that someone as ‘less of a person’ because they struggle, we have to become more understanding. We are all equal, no matter what we do or don’t do, and no matter what struggles we may face. Going through an experience such as a PANDAS / PANS flare can loosen your ego and allow you to see that everything could be taken away from you at any moment, and that these things can happen to anyone. It helps you to drop your pride and see that what you do is separate from you in the sense that you do not walk around your achievements attached to you, and these things do not define your worth. We are all inherently worthy.
9. You know yourself best. PANDAS and PANS are commonly misunderstood conditions, people often have to see many doctors before an accurate diagnosis is given and some people are told ‘it’s not real’ despite the evidence saying that it is. This leaves people desperate for help and for a diagnosis, but the good thing is that most people do not give up on finding a doctor who will listen. They know what is going on and the people with the condition know themselves best, or if they are young then their family will know them best. This is something I have learnt, my mum has known me so well and she suspected I had PANDAS from the beginning, but she was told by the doctor not to ‘believe everything you read on the internet’ - but my mum was right. Listen to your intuition and keep seeking answers, no matter what anyone else thinks.
10. Working with your struggles is sometimes more helpful than working against them. This is not to say that it isn't important to treat the condition - it is vital, but when experiencing symptoms, I found that it is better to go with the flow than to go against it.
Trying to do what other people are doing or what we think we think we 'should do' can be counterproductive when our brains are working a little bit differently. So, instead of trying to normalise myself, I found that it is healthier to just be myself. Instead of trying to be still or calm when hyper, which is pointless, I use it as an indication that I need a break or that I need to move around. Instead of blaming myself for feeling sad and shaming myself for it, I let it be and sink into the feeling, rather than resisting it - and it is much better this way.
11. A tiny bit of progress can be a huge victory. For someone with PANDAS/PANS, simple daily tasks can become a huge chore. Due to my condition, I have struggled to write, read, dress myself, sleep, walk up stairs and do things that others take for granted. When your ability to do the 'little things' comes back, it seems like a miracle. Always celebrate how far you have come and express gratitude that you are not where you used to be. Little steps forward can mean the world to some people.
What lessons have you learnt from the struggles you have faced in life?