Feel quite alone here sometimes

[kit10grl]

DD has so many different health issues. Most people here have some of her problems. No one else seems to be in a position similar to ALL the things we are dealing with.

Makes me feel very alone. Not helped by the fact no one has ever heard of her condition. Does it make me a bad person that sometimes I'm a little jealous of the parents with children of things like Downs or CP because at least people (including doctors) don't have me repeat the name several times. Or ask me to spell it for them. Only once have I ever been met with someone who has heard of it before.

 

[maisie78]

I totally know what you mean xx No one has heard of incontinentia pigmenti. It is so rare, like one in half a million or so I've read. What I have done is try to find things I have in common with other parents and start from there. I know it's not the same as having someone that knows exactly what you are talking about but it definitely helps I have made good friends with a woman from this site whose child is blind like Gabriella. Our children don't have the same condition and in many ways their issues are very different but we had a common ground to start from and now we talk about everything.

You're not alone hun xxx

 

[Ninagrrl]

I do understand how you are feeling in a different way. My son has no diagnosis. I end up having to explain a million different symptoms and play connect the dots and no one fully understands that I can't just say "oh, he has this.." It's the same as you having to go through to explain all of the symptoms because people aren't familiar with it.

It doesn't bother me as much in casual conversation because I can just be general about it, but when my son goes to see a whole bunch of different specialists and they all want to know ALL the symptoms... blah. Most of the time I go home and then realize that I have forgotten to mention something. I really need to sit down and write everything down but that is so depressing since he has so many varying symptoms that can't just be put down in 1 or 2 words.

 

[kit10grl]

Yes that's it exactly. Because her condition is a spectrum no two cases have th same symptoms to the same severity so we get a lot of repetition at our appointments. I hate having to do that.

I'm glad other people understand

 

[Janers]

You're not alone.

I feel the same way about my daughter, I have to explain my daughters condition too every specialist she see's. Its slowly getting better, we're seeing less doctors and the ones we continue too see know her well.

I wish people (doctors, and just people we meet day to day) could look at her and not have a bunch of questions, or worst not ask and just stare.

I know I am extremely lucky she is as healthy as she is, and she does not have all the complications that can come with her condition but it is still difficult.

 

[lozzy21]

While not on the same level I do understand too. Apart from her team of specialists no one believes me when I say she has arthritis. I once had a nurse from NHS direct accuse me of lying in not so many words and quiz me about things that were not related to her arthritis. Why did she need to know when and who diagnosed her when I was ringing about her having a high temp that was not shifting.