Hi my name is Chelsea and I have Pots Syndrome (Postural orthostatic tachycardia syndrome).
These are things people have said to me.
- You done that yesterday?
- It’s only other there come on!
- Have you done nothing today!
- If you think positive you will feel better! Just push throw it.
- How do you feel that bad you look fine?!.
There are things I never say out loud, I will compare the responses I gave to the response I wanted to give:
1)Response:Sorry I’m just not well
What I want to say: Yes I did maybe that’s why I can’t today I’m so worn out I can’t handle this.
2)Response: Errm okay one minute.
What I want to say: (It may be to you only a few steps but my visions going my legs are giving way please I need to stop.
3)Response: (Feelings of being useless) I’ve done a little sorry.
What I want to say: I’ve done all that my body will allow me today please just understand.
4)Response: I’m trying.
What I want to say: I wake up every day trying to think positive but when you don’t feel alive how can you live.
5)Response: I know it’s hard to explain.
What you I to say: For a start I’m struggling to make out what you’re saying due to brain fog my hearts going two to the dozen my legs are given way but hay you wouldn’t understand.
Words really do hurt the most especially when coming from friends/family why they can’t seem to understand your pain but they can understand a person’s struggle which is a well know/Visible illness. I don’t think people understand how much stress this puts on a already ill person pushing there self’s to breaking point just to please everyone else/Doctors not knowing what to do/An already large list of scary symptoms growing larger. It just drains you as a person but also makes you grow knowing you’re pushed to break most day’s but don’t we’re all so strong and as long as you know that it’s all that counts.