Trigger warning: This post contains mentions of traumatic incidents.
PANS/PANDAS can be traumatic for the whole family.
In absolutely no way is it the fault of the person with PANS/PANDAS, it is just the type of impact that the condition can have. It can be difficult for both the individual and the whole family.
Not only are parents often traumatized by seeing their child suffer so much with such horrific symptoms.
Parents can also be traumatized by the reactions they get from others, such as when family members and medical professionals imply that the child's symptoms are caused by the parent being a 'bad parent' or when the parent is treated in a condescending way by doctors or is disbelieved.
Both parents and the individual with PANS/PANDAS can be traumatized when treatment which could give the person's quality of life back is denied. This happens too often, as insurance companies or national health services may not cover the PANS/PANDAS treatments.
The individual and their parents may feel as if they have to advocate and research constantly without a break and this can be incredibly stressful. People may feel like they are not being listened to and like they are deeply misunderstood as they may not be able to get the help of a specialist.
Some parents may be blamed for causing or exaggerating their child's issues, accusations like this can be traumatic for the parents. This happens commonly and is heartbreaking.
Trauma in parents of people with PANS/PANDAS may lead to…
Parents mourning for their child as their child has changed so much.
Parents doubting their parenting.
Being unable to focus at work.
Being reactive and snappy.
Panicking when their child shouts or makes a loud noise as it reminds them of rage attacks.
Parents living in fear of their child having another flare.
Parents being afraid of doctors appointments for their child.
Low self-esteem and PTSD.
Parents not being able to interact with others from fear of judgement.
A mental breakdown & burnout.
Frustration from being so misunderstood.
☆ It is normal to miss your child and want them to be themselves again.
☆ It is never your fault that your child has the symptoms of PANS/PANDAS.
☆ Never listen to the doctors who try to blame you for your child's condition.
It is understandable that parents become traumatized by seeing their child struggle so much.
People with PANS / PANDAS also often become traumatized from the impact of the conditions, so not only is one dealing with the debilitating symptoms of the condition, but with trauma as well.
People with PANS/PANDAS can become traumatized for many reasons…
Due to dealing with horrific symptoms and losing themselves.
Due to feeling invalidated, like people don't understand how bad it is for them.
Due to being repeatedly misdiagnosed.
Due to doctors telling them that they are just 'badly behaved'.
Due to doctors giving them behavioral charts and recommending discipline. This will not help brain inflammation.
Due to traumatic hospitalizations.
Due to friends leaving them.
Due to family members and friends not believing the diagnosis.
Trauma in people with PANS / PANDAS may lead to…
Being defensive about symptoms, over-explaining them and getting angry when people don't understand, because a person has already been misunderstood so much.
Anger about everything that has happened.
Anger towards doctors and a fear of going to doctors.
Feeling unworthy of love due to symptoms.
This can all take a while to heal, but the effects of the trauma can be healed. Living with PANS / PANDAS can be horrific, so it is understandable that people get traumatized by it.
These are some things which have personally helped me deal with the trauma associated with PANS / PANDAS:
Writing a letter to one of the doctors who misunderstood me and invalidated me, but never giving it to them.
Having the attitude that I can make my experiences worthwhile. Living with PANS / PANDAS / BGE is tough, but we can sometimes make some of our difficult experiences seem more worthwhile. Having the thought in your head of "How can I use this experience to help others?" or "What can I learn from this struggle?" can make a huge difference. Then, taking action on that to make a positive difference in the world. Use what you have learnt from the traumatic experiences to try and prevent others from needing to go through the same struggle.
For example, you could write (kindly) to a service which didn't understand you and which caused you trauma, and calmly explain how it made you feel. Request that they have training for the team, possibly from someone with lived experience.
You could also set up a social media account, blog, or organisation to help others who are going through the struggle, or write a book about your experiences.
Ripping up and destroying old sticker charts, methods of discipline for something uncontrollable. Trust me, it's pretty therapeutic. Also, please note that my parents never did anything wrong in using these charts, they were doing what the doctors and therapists said and were trying to do what they thought was best for me at the time.