Dealing with a PANS Diagnosis: How to Cope

My initial onset of PANDAS was back in 2005 when the medical community knew very little and some doctors didn’t accept PANDAS as real diagnosis, so I went through a lot of misdiagnoses and unhelpful treatments before we found a doctor that recognized what was going on and we started trying all kinds of treatments to help. Having been diagnosed around 12 and hoping it would slowly go away as I got older became more and more difficult as I approached my 20s. I still have PANDAS and many of the symptoms associated fluctuate in severity over the years and I’m turning 29 soon. Some things that have really helped me come to terms that my PANDAS is in fact not pediatric and will probably be an issue for my whole life have been finding and building a support network over time of people who accept me for who I am even if they don’t fully understand all that I go through. Finding a good psychiatrist, psychologist, and general practitioner has been a journey but once I found the right doctors it was life changing. Learning to advocate for myself and my needs with doctors, work, and people in general was difficult because PANDAS can be hard to explain and many people don’t understand and dismiss it as an invalid reason to need extra rest or other health related boundaries, but you and your symptoms are real and valid and as difficult as it is, it is important to listen to your body and speak up when you need help or accommodation to take care of yourself. Most importantly, whether your symptoms are up or down, and no matter how bad things might seem, don’t give up. It can be so difficult to get up every day and keep going not knowing how things are going to pan out, if you’ll ever feel better, but you are needed and loved and one way you can take control of your situation is to just keep going no matter what. Fall seven times and get up eight. For me it feels more like fall a thousand times and get up one thousand and one, but the important part is to keep getting up! Sorry this is so long this is the first time I’ve been in connection with other people with PANDAS after having it for 17 years so I guess I have a lot to say lol.