Question
Hi Barbara,

Thankyou for your time in answering this.  My boyfriend has EDS (classic type) I was wondering if you could give me some general psychological as well as relationship (sex) type information which is sorely lacking on the internet.  Mainly, for the relationships side, I just don't want to hurt him and whether or not the condition makes the skin more sensitive and what are the other limitations.  I am very serious about continuing my relationship with him but I am very new to this disorder so please forgive my ignorance.

Thanks again
Peta  

Answer
Hi Peta,

This is a very sensitive topic and not many organizations have wanted to tackle this discussion candidly.  EDS Today, the newsletter for, by, and about, people with EDS is going to put a newsletter out on sexual function and EDS as part of its series on life issues in the Spring issues, but we haven't gotten the articles in place yet for this topic.

My personal experience is with the hypermobile type of EDS, so the accommodations we have needed to make have been things like pillow to prevent hip dislocations.  

The discussion of sexual relationships and EDS has been discussed openly and candidly on the CEDA EDS email group.  The 400+ members of CEDA have various types of EDS and are very open about sharing their experiences.  You can join CEDA at http://health.groups.yahoo.com/group/ceda/

I hope you will join CEDA and ask questions.  It is a very friendly, caring group of people who will answer your questions honestly.  Anything is open for discussion on CEDA and members treat each other with respect so you can feel comfortable asking any questions you have.

There is also a support group for spouses/partners of people with EDS at http://health.groups.yahoo.com/group/cedasupport/ but there are only 12 members and no one really posts there much.

As for other relationship issues, the most important thing you can do is let him decide his own limitations.  Don't push him to do things he doesn't want to go, but also don't try to hold him back from doing things you think might hurt him.  He needs to control his limitations and it can put a strain on the relationship if he feels he is not in control of his abilities.

I would be happy to talk to you in more detail.  Just email me at [email protected].

-Barb