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Cammywammy

782d

Hi all! I was just diagnosed with PANS and I was wondering how you’ve all come to terms with your illnesses? I’ve been battling for apparently several years but didn’t know it. Did you all have a hard time getting diagnosed as well?

Top reply
    • Cammywammy

      587d

      @YaeMiko don’t be sorry for having something to say! Honestly your words mean so much, and I know exactly what you’re talking about when people dismiss how you feel. I always struggle with that, with being too sick to stay home and do nothing about it. Or not sick enough in the doctors eyes. I know what you mean by falling a thousand times, too. I feel everyday I’m faced with a 100 brick walls I have to run at and I can’t figure out how to get past them, while others are able to walk around their one or climb over it. I don’t know if this happens to you but the one of the worst parts has been losing the ability to trust anything. Whether it’s doctors, therapists, or even myself. Because I was told for so long that it was all in my head and that I just had a lot of anxiety, that’s what I started to believe. And then one day they were like JUST KIDDING! Here’s all these things that are wrong with you and we’ll guess again at what may work and what might not. And omg is that confusing. Did you have a rough period as well? I had a few times where things really went down hill during a flare. But, there were other times where I was able to do my everyday things again. Thank you for all your kind words, and I’m sending lots of hope and love your way!

    • YaeMiko

      634d

      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.

      • Cammywammy

        587d

        @YaeMiko don’t be sorry for having something to say! Honestly your words mean so much, and I know exactly what you’re talking about when people dismiss how you feel. I always struggle with that, with being too sick to stay home and do nothing about it. Or not sick enough in the doctors eyes. I know what you mean by falling a thousand times, too. I feel everyday I’m faced with a 100 brick walls I have to run at and I can’t figure out how to get past them, while others are able to walk around their one or climb over it. I don’t know if this happens to you but the one of the worst parts has been losing the ability to trust anything. Whether it’s doctors, therapists, or even myself. Because I was told for so long that it was all in my head and that I just had a lot of anxiety, that’s what I started to believe. And then one day they were like JUST KIDDING! Here’s all these things that are wrong with you and we’ll guess again at what may work and what might not. And omg is that confusing. Did you have a rough period as well? I had a few times where things really went down hill during a flare. But, there were other times where I was able to do my everyday things again. Thank you for all your kind words, and I’m sending lots of hope and love your way!

    • Boo2004

      749d

      I have come to terms with my pandas diagnosis because it made me a better person and showed me who really cares. I still struggle but it is what it is.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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