6 Tips on How to be a Better Partner to Someone with Ehlers-Danlos Syndrome

[@ehlersdanlosandi]

What are your tips for partners of EDS and HSD people?

[@curiouslittlefrog]

Learn to recognize symptoms, especially when your partner is ignoring them or can’t notice! My husband often reminds me when he sees me getting “POTSy” and I need to take a break. Sometimes I am too in my head to notice my own symptoms! Like you said, about the trash.

[@curiouslittlefrog]

Make a list of safe foods/recipes your EDS partner can eat BEFORE they are flaring. Many have food sensitivities, and when we aren’t feeling well and can’t feed ourselves it is SO helpful because my husband can start a meal he knows I can eat!

[@curiouslittlefrog]

Divide tasks by physical vs mental load. My husband does most of the chores with a physical component, where I am more comfortable taking the chores with a mental component that I can do from a chair or from bed. But to us it still feels like we have equal burden, just in different areas.

[@curiouslittlefrog]

For date days, plan a low, medium, and high energy date in advance (this is easier when you don’t have to make reservations etc). For us we choose something that is at home(low energy), or an activity outside at our home that we don’t have to drive to(medium energy), or something that requires driving to get to an activity (high energy). That way when it comes to the planned date time, we can opt for whatever energy level I am feeling and still get that connection time. Without having to cancel all the time for lack of energy. It was so disappointing to make plans as if I would have some amount of energy, and then have juuuuust not enough spoons. It was honestly kind of heartbreaking. Now it’s just an easy question “okay, what’s your energy level?” And we do that!

[@curiouslittlefrog]

This is so helpful for partners, especially of newly diagnosed or people trying to get diagnosed! Thank you! It is such a tough time when you feel alone and I appreciate you building community like this where people can feel seen!

[@ehlersdanlosandi]

Thank you so much!

[@niamhdonnellan7752]

Thank you, what a lovely video ❤

[@ehlersdanlosandi]

Thank you so much!

[@michaelaalonzo5546]

Why do they make those bottles soooo hard to open. I use those rubber jar openers. One on bottom and one on the cap 😑

[@ehlersdanlosandi]

Right?! Thank goodness for my husband. When he's not around, I wear rubber gloves to open jars, or this jar opening tool I bought from pampered chef years ago.

[@shannongreenwell1278]

Unfortunately I don’t have a partner or husband, I do have a dad and sister and niece and nephew, what would your advice be for them on accepting someone who has EDS?

[@ehlersdanlosandi]

Advice for friends and family of EDSers, I'd definitely say: believe them, don't stop including them in social invites even if they turn you down a lot because of EDS (it's noce to feel included and they will sometimes say yes), possibly accompany them to appointments or offer to drive or make a fun road trip out of a far away specialist appointment. That's all I can think of right now, but I'll probably make a dedicated video soon 😊

[@shannongreenwell1278]

@@ehlersdanlosandi Thank you, I appreciate that! I think it’s hard for my sister and nephew to really accept me because I have EDS and I’m Developmentally delayed ( Autistic).

[@ehlersdanlosandi]

@shannongreenwell1278 I think it's sometimes hard for people to accept and understand what they don't experience themselves. Hopefully my videos will reach plenty of people who don't have EDS to help spread awareness!