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A letter to those with PANDAS / PANS / Basal Ganglia Encephalitis

This experience is making you strong. You are growing and evolving as a person and the struggles you face are helping you develop empathy, compassion and wisdom. Once the worst of this is over you will have transformed as a person, becoming a new version of yourself as you have grown so much from this.

You are a wonderful person and you can use your pain to develop creativity and new ways of thinking. I know it is horrible and I know that it hurts to be going through this, but it won't be like this forever, things can improve.

Please be as gentle with yourself as you can be. When you are going through so much it can be difficult to do the things you usually do and it can be frustrating at times, but cut yourself some slack and know that it is okay if you struggle to do something. You are resilient and you are trying really hard, I can see that. Sometimes the most important thing to do is rest to let your brain and mind heal.

Know that you can let go of any guilt you may feel. The rage attacks, compulsions, intrusive thoughts, tics, defiance, irritability, hyperactivity etc are all symptoms and nothing to be ashamed of. You never need to be angry at yourself for having symptoms, this is what your brain is making you do, it isn't you. Being unable to stop your OCD compulsions, tics and hyperactivity doesn't mean that you lack willpower, it means that your brain is misfiring signals and causing these things to happen. Feeling anxious or depressed doesn't make you weak or ungrateful. In fact, it makes you strong. Not many people could get through what you are going through... you are a warrior. Feeling sad is an emotion that we must allow to flow within us, fighting it only makes it worse. We are here to experience a rage of emotions and you never needed to be happy all the time. There is no shame in feeling down, nurture yourself and try to be as compassionate with yourself as you can be, but don't be angry at yourself if the inner critic gets too loud, that happens sometimes. Learning to be kind to ourselves is a journey that takes time, but it is worth it.

You may be going through a tough bout of symptoms right now but I want to remind you that it always passes. Things are hard sometimes but they do get easier. Sometimes your mind plays tricks on you, but rest assured that the world isn't as dark and scary as it may seem and things do work out.

I want to remind you that it's okay to be imperfect. We were never here to be perfect, we are here to be our authentic selves. If we were perfect then we would have no way to evolve, but we are always growing, changing and transforming and that is what makes life beautiful.

I know things may be very confusing for you now, you may not really understand what is going on in your mind, it's okay. You don't need to, it's all part of the experience.

I've seen people go through a waking nightmare and then come out of it much better than they ever thought would be possible. There is hope, so much hope, even if it may not seem like it right now.

Sometimes you may feel like your struggle isn't seen as a lot of it is in your head or is so complex that others may not understand. I want you to know that I see your struggle, I see your pain, I know it is hard for you and your feelings are valid. You are worthy of help and support, and I really hope that you can get that.

You have already overcome so much, you have come far. Take credit for how far you have come and know your strength. Life is better than you can imagine right now, one day you will see that.

Know that it is okay to miss the old you. You are allowed to be feeling this way. This is something that you never expected. You didn't expect to change so quickly. You didn't expect to be living with debilitating OCD, psychosis, tics, depression, rages, regression or whatever symptoms you may experience (we are all different.) It's okay to feel at a loss sometimes. I know it's hard. The person you are now is just as worthy and there comes a point where you may begin to feel more acceptance towards how things have changed. You may start to feel that the path you are on now is leading you to a much more interesting and worthwhile place than where you thought you would be in life. We cannot change what has already happened.

Always remember that thoughts are just thoughts even when they may feel like they are more. You're not too sensitive, you worry because you care, because you have a pure heart. You have a pure heart even at the times when you may doubt it.

Always keep in mind, once you are better, how are you going to use this experience to help others? You can use this experience to make someone's life easier, but for now, focus on your own wellbeing and recovery.

Sometimes you may feel very different to others, like a bit of an outcast. Own it. Own the fact that you have differences, own the fact that you have unique experiences and make the most of what you have. Diversity is a beautiful thing.

When in a flare, there's no need to hold yourself to the standards you usually would and you never need to hold yourself to neurotypical standards. Do things in a way that works for you, advocate for yourself and take things easy where you can. There are no rules to life, you can do things in your own way.

You are needed in this world as there is something that you are here to give to the world, this experience may be preparing you for something - something much better.

It is okay to be unproductive or to have nothing to show for the day, what is important is that you survived and that you keep going. Remember that you are always worthy of love and compassion, regardless of the circumstances and you are allowed to have self-compassion no matter what you have done and no matter how many mistakes you have made.

Do research about your condition if you feel that that may help, sometimes it really does. It allows you to feel more understood and to understand yourself.

It can help you find ways to manage your condition and make things easier for yourself. It can help you develop self-compassion as you can see that the things you experience really are symptoms and are out of your control.

I know you are not faking this. At times we may doubt ourselves and ask ourselves whether we are secretly faking or doing it all for attention even though we know we aren't. This is a common feeling, you are not alone. Again, it is all part of the experience and can pass. A person who was faking it wouldn't worry about whether they were faking it or not and you wouldn't put yourself through this.

You have nothing to be ashamed of, we are all human and there's nothing to hide.

At times we may come into contact with people who don't understand, ignore them. You know yourself best and you needn't listen to those who think they know you or your condition without living a second of it. Be around those who listen to you and are willing to learn.

Even if it doesn't feel like it, remember that there are many others who have been through similar experiences. You may feel like you're the only one, but that is false.

At times you may develop new symptoms, and understandably this can be very scary for you. Just please know that it will all be okay and that there are people who care about you and want to try and help. You are safe and you can get through this. You have already overcome so much so remember that you can step up to this challenge and face whatever comes even if it may be hard. Know that it's okay to say that you are finding things hard, this journey isn't easy but you have the strength within you and you are allowed to ask for help.

Know that you are allowed to stick up for yourself. If someone is bullying you for your symptoms, or for anything, know that you never deserve that, empower yourself and remind yourself of your worth. No matter how anyone treats you, you are divine and you are always worthy of love and respect and your condition is not your fault. No one has the right to treat you badly or try to bring you down.

Remember that it is okay to feel how you feel... if you feel hopeless, it is valid, if you feel angry, it is valid, if you feel scared, it is valid. However you feel is acceptable and you never have to judge how you feel.

Allow yourself to cry and know that you can forgive yourself if you react emotionally, it can be exceedingly difficult to regulate your emotions when going through such a struggle, so remind yourself that you are doing the best you can and you never need to prove your guilt. Take the pressure off of yourself and just try your best.

Remember that you are allowed to set boundaries, say no and do what is best for your wellbeing. If you don't feel comfortable with something, it is okay and you can do what is best for you. Don't let anything impede your recovery or your wellbeing.

You are not causing this yourself. You aren't to blame. Your struggle has never been a flaw or a personal failure in any way, shape or form. Your struggle makes you strong. You are a very interesting person with a lot of depth, use that. Your experiences may be giving you a new outlook of the world and may be softening you and giving you more depth so that you can grow.

Despite the importance of growing and evolving however, know that there is nothing at all wrong with who you are now. You never need to force yourself to change or be a new or better version of yourself. You are perfect and as worthy as you'll ever be right now, even if you don't see it. Evolution and growth is a natural process, just trust that.

There is nothing at all that you need to do to earn your worth, you cannot earn worth if you are already fully worthy - which you are. You never need to force yourself into something due to feelings of guilt, obligation or fear. You are free to be who you want to be and do what makes you happy, not what you feel like you have to do.

Go up your own individual path as there is no need to do what other people are doing. Just because most people are doing things in a specific way or living their life in the way in which most people in society are doesn't mean that you have to. You are allowed to take the stress off of yourself and follow your own unique life path - the road less travelled is often the best path.

You are allowed to love yourself exactly as you are right now. Be as kind to yourself as you can, as if you were a small child that needed nurturing, be your own nurturing presence. There are so many beautiful things in life that you have not experienced yet, that you are not even aware of. It is strange how when things start to get better, so many things seem to open up and you become aware of a level of love and beauty in the world that you never thought existed.

There may be a bully in your head and it is not your fault. I love you, you are loved. I hope you know that.


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