advice

I have something on my mind lately that I would like to share and I mean everything I say in love.

When facing any kind of illness it is a mental and physical uphill battle. The worst thing that someone with POTS or any other illness really is to be told they are faking it, or using it to their advantage and don't really need help. Coming from experience being told any of that completely crushes and leaves you in a state of depression because nobody will believe you. People are really quick to say hey do this or try that or push through your symptoms and get moving when they have no ground to stand on. For those with pots it is not that easy. You can't push through your symptoms much because you end up doing more harm than good.

People with POTS are often told by peers or family that they just need to push through the pain and go out and live life just like they did before and everything will get better. I will say I have seen this happen but it was in someone with very mild POTS. People tend to think this syndrome is not as bad as we make it out to be and we don't need canes or wheelchairs and all they need to do is exercise and you will go into remission and they be cured. This is completely not true thee is no cure for POTS and dysautonomia, there are things you can do to help yourself such as exercise but that has to be done insanely slow because basically you are retraining your brain to adjust to temperatures, blood pressure changes, postural changes and any kind of movement. That takes time. If you aren't educated in the disease it is not okay to say what people need to do and how they SHOULD FEEL as if they are an expert and living with this disease in itself.

In conclusion just think before you speak. Saying any of the above is soul crushing and from experience can cause mental breakdowns because you feel alone and not believed. Show love, comfort, peace, understanding and just a listening ear instead of being quick to think you know the solution to it all. This is hard enough without the negative comments we all receive.