I’m not sure if this is helpful or makes sense. I’m going to share this anyways despite my own self-doubt. If you want to help and aren’t sure how, here are a few ways.
Simply checking in helps a lot. “How are you feeling?” or “Are you doing okay? or Is there anything that you need? or Do you need extra help with anything today?”. It’s just to know that I’m not in this alone. It is difficult to bring up and I don’t want to make people feel sad or uncomfortable. Sometimes it feels emotionally isolating even though we’re in the same room. Sometimes it feels like no one notices what I am going through because no one asks. I think that people don’t want me to feel like they are treating me any differently, so they ignore it and try to pretend like its normal. It makes me feel like I am going crazy again. It reminds me of when I was trying to find a diagnosis and it was “all in my head”. Sometimes I doubt myself and my symptoms because it doesn’t feel real, it’s not very tangible sometimes. It is really helpful to have someone else to re-affirm that what I am experiencing and feeling is very real. Then I’m no longer watching the world revolve from outer-space, far away. I’m grounded, tethered to you.
When in doubt, hug it out. Sometimes we all could just use a hug. Even though it won’t make the pain or the exhaustion or weakness/paralysis go away, it sure as heck makes you feel better.
Take the time to do some research. It’s really exhausting having to explain the same things over and over again. Also, you really need to understand the symptoms and condition itself in order to be helpful at all. No shade but it’s not something you can easily understand by just having someone tell you a few things about it. There’s a lot to it. Ion channel disorders can be tricky in that way.
Help me figure it out
Our bodies change over time, for better or worse. We may have new symptoms or suddenly become worse, which can be scary. The uncertainty of what life will be like in the future is something that I have to live with. Because of this, I won’t always know what it is that I need. My physical health is constantly fluctuating, which can be disorienting and confusing. But with the help of others, who are looking through the glass from the outside in, it is a lot easier to figure it out. That’s why it’s important to have some good support, especially that of doctors, therapists, or other specialists who can give you an idea of what it is that you need. I guess just having extra support is helpful in and of itself, whether it is from a specialist or family and friends.