[mrsmith]

Many of my friend and family have provided me tons of support, but it is extremely hard to be around them. I try to explain my condition as best I can, but it is hard to understand for many.

They do not realize strong hugs, shoves, that kind of stuff can really hurt me. They do not intentionally make me worse, but they do.

This makes me very depressed as I feel like I am alone, and it's really hard to trust people.

Does anyone else have this problem?

[NormaW]

It is hard to explain to people how bad you feel and that your sleeping or resting and don't want to answer the phone or do anything else.

Since people really don't understand you have to set up your boundaries and explain them to people. I have 4 teenagers and when I was recovering I never came out of my room. If I did people assume you are feeling better.

No problems or headaches where brought into my room someone else dealt with them and Mom was to be feed 3 times a day (this did not always happen).

You will have to explain to everyone that touching hurts, noise hurt, normal conversation after a few minutes is tiring (I set a 15 minute limit, it was hard because I feel I was being rude) but you need to do this.

Make up a chalk board with the written rules so everyone understands and remembers. People really do want to help and a hug would seem quite normal but I am sure they would not if they realize it hurts.

If you can't do it yourself get a family member to help organize it (the helpful hugging ones).

Good luck and it will get better and people will get educated eventually, it is really not very well understood condition.
but not too hard...

[poetrymom]

I found it takes a lot of energy to be around people, and certainly it takes energy to have conversations.

I am mostly over all of these problems, but I know what you mean about how it's hard to be around people. For me, it just takes a lot of energy and it still does.

It sounds like you have a nice network of people helping you though.

Hang in there for better days to come.

pm

[MiaVita2012]

We are hurt and irritable.It takes too much of our energy to explain to people.And they still will not get it unless they have had a head injury.I told people to try to do research on PCS and then get back with me. I had to keep everyone including family at a distance to keep my sanity. Not because they were not supportive....they just don't understand! There is so much complexity of this complex syndrome to explain. (((You are not alone)))

[berkeleybrain]

The video that Mark from Idaho has linked "You look fine" really helped me and my family.

It is hard to advocate for yourself and to take the solitary time/space required to heal.

You and your brain will learn to accept more complexity and chaos, but it will take time. You try and learn.

Be well and kind to yourself.

[Living_Dazed]

Most times people are just TOO loud. My niece likes to hang, touch me all the time. My senses go berserk and my brain shuts down. But, I look fine.

My immediate family understands. Friends and extended family don't understand that outside of my home is like a hostile zone for me.

Time. Everyone keeps saying it takes time. A v e r y l o n g t i m e !