Hi all hope yous are all well

I need a rant as im so fed up with people falling out with me through my stupid ih,
i never asked to be diagnosed

i could manage with people not speaking to me or avoiding me but saying they are going to my 2 year olds birthday party (5th september) all the way from jan this year (before i got diagnosed) even confirming their little child is going the day before to not turn up . my little 1 was upset as her "friend" never turned up as me and my partner was saying to my little 1 watch out for your friend.

I had no contact off my so called friend until i texted her saying why didnt you turn uo to the party hope everything is ok with you, I got a text baxk saying its your ih

she knew i had ih and she said she understands it . Is there anything else my daughter needs to miss out on through it?

i am so fed up with people thinking i dont have feelings because i have this disorder, it still hurts when people are like this but it kills me when i see my little one feeling bad because she cant play with her friend anymore.

Hi Jean , I am a little confused as to why your friends are using your IH as a way of not speaking to you, after all it is a neurological condition not an infectious one. To say they understand your IH, obviously can't be true as they wouldn't feel the need to stay away if that was the case.

I myself had this happen to when I had my first shunt, and then again 5 years ago. All my friends suddenly dropped away even the ones I had worked with for over 15 years. I don't think it is down to your condition as such, but I think as it means that you can't do the things you used to with them before, or be as accommodating as you were before, they soon lose interest in you and disappear.

However, the fact that this is impacting on your daughter, because she is friends with their children, is thoughtless and cruel to the children. They are not thinking of them but themselves, and as awful as it sounds Jean you're better off without them if that is the attitude they are going to take.

I'm sure you have provided your friends with all the information they need, as you can print off things from here and from the IH Research Foundation to give them. If you have done this, and they have still done this to you, then this is how you find out who your friends really are I'm afraid. At the end of the day it's not you they are just hurting, but your daughter too, who doesn't have a clue what is going on, and who you are protecting from your illness as much as possible, by keeping things as normal as you can.

You can either write a letter to your friend explaining how you feel and how this has affected your daughter, and include more information again about your IIH, or you can sit down and talk to her. You shouldn't be made to feel guilty and upset about having this condition, as it is hard enough to deal with as it is, without your friends making it harder, They should be giving you support not penalising you for it. Let me know Jean how you get on, and I'm here when you need me DON'T let them get you down!

HI heidi thanks for the reply.
I have tried to speak to my friend and she also admitted she has nothing in common with me now as i have beaten my depression and shes not ready to beat hers as she likes it,
apparently she has already read a lot of information on ih so really its her loss and to be honest i wouldnt want my little girl to mix with people like that,
so she has loss me as a friend as i dont want to know people who are that thoughtless about other peoples condition, so its time to move on and think about my family and myself.
On a good note, since my little ones birthday i have made up with my partners family
as we had a big fall out last Christmas when i had a break down.
jean

Jean it's lovely to see that you have some of your confidence back, and that you are also beating your depression. I know you have had a very tough year and had to overcome quite a lot. I'm glad you have made up with your partners family, and I am sure that has been a weight off your shoulders doing so.

You have the right attitude toweards this so called friend, and it is a shame that she isn't pleased for you moving on with your life. Still, you ARE moving on with your life, and that is a BIG positive, not just for you, but your little girl and family, and they are what counts.

Keep on this positive path you are on Jean, as you deserve to be happy and confident in the knowledge that you are making a better IIH life for yourself.