There are times we struggle a bit with our knowledge of EDS ; we see symptoms in several people we know – in friends, in cast members at the theatre, and so on. (I am not even talking about family here – that is a whole other issue to deal with!)
For Em, it is very much a thing of simply not wanting to draw attention to herself; not wanting to be the sick girl and wanting to be normal. For me, it is a matter of wanting to protect Em’s privacy and of not wanting to have others think I am crazy when I bring it up. When I see it in others, the questions of ‘how much do I share?’ and ‘how do I say it?’ come up. How can you share such profound information in a casual situation without seeming like an obnoxious loon? On the other hand, how can you NOT share such life changing information with someone who may desperately need it?
It is an awkward but important decision to have to make.
I think each situation is a unique case, governed by the personalities involved and how well you are acquainted with that person. For instance, my daughter was convinced that one of her best friends has EDS and, at first, I thought she was blowing it out of all proportion. But, the more we talked and the more we discussed symptoms, the more she and her friend convinced me. Then it was up to me to talk to the other mom, who I have known for years. Not an easy conversation. But, it ended up being a good conversation and a productive one. Do I know if this gal has EDS? Nope. But, I can point the parents in the right direction so they can find out and I can be a support for them no matter what they find out.
Then we have all of our friends at the theatre. From the start of rehearsals for The Sound of Music, we saw hypermobility everywhere. EVERYWHERE. It is like the theatre is an EDS magnet or something!
Now, just because someone is obviously hypermobile doesn’t mean they have EDS, so all we could do is wait and watch. When Em hurt her ankle Saturday before the show and we had to talk about her medical condition, the flood gates opened. At least 2 people we hadn’t even pegged as possible EDS, started getting very curious about what we were talking about because they have so many of the symptoms we mentioned. One I am almost positive has it, the other, very possibly but our conversation got interrupted and so I cannot be sure. (And that doesn’t include the gal my husband talked to and is convinced has it or the several others that we are suspicious of.)
That is where it gets so awkward. It is a beautiful and wonderful thing to be able to reach out and share information that can help someone. BUT… It is an Incredibly Delicate Thing to essentially inform someone that they may have an incurable genetic condition. It takes some careful dancing around the topic and it is not pleasant in many ways.
But, again, how do you not at least share information with them? If you don’t, you are possibly preventing them from getting the care they need and wouldn’t you bear some responsibility for that? To have The Answer and not give it to them seems unconscionable. How can I, who wishes for nothing more than to have known about EDS before Em got so sick, not reach out to others who may have it? That is the rub. I don’t want to be the one to tell them, but, if I don’t, no one else will and I can’t live with that.
Like I said, each situation is unique. If you know the person well you can judge how best to bring it up, otherwise, you just have to wing it and pray. Unfortunately, we have had several of these conversations and I can share what I have learned because I am getting better at it…
- I tend to wait for an opening that sort of naturally allows me to broach the topic, like Em’s injury. Even better if THEY open the door wide for you by saying something like ‘Oh, I can pop my hip out…watch me!’ For me, all bets are off at that point and they are fair game. That leads to questions like ‘can you touch your thumb to your forearm? Are your joints unstable?’
- I always, always follow up mentioning loose/unstable joints with the other symptoms. Something like: “Because collagen is all over the body, if it is defective, it can cause problems throughout the body. For instance, the digestive system is mostly collagen, so someone with EDS can have gut problems – IBS, pain, trouble eating, poor appetite. And, the autonomic nervous system can be affected, so they get dizzy when they stand up and maybe even faint. Headaches, neck pain, eye problems, jaw problems, dental problems, chronic fatigue… the list goes on and on…” Often, at that point, their jaw drops because I have just named most of their problems.
- At that point, I might ask “Is this something you might be interested in learning more about? If you are, I can give you more information and answer any questions you might have.” This gives them an out, if it is too much at that moment and gives them time to absorb this new information. If they say yes, I print off a couple articles to share with them and give them links, so they can educate themselves. If they want to pursue it further, I can give them the number for the connective tissue clinic at Cincinnati Children’s.
- I also try to hit the highlights of intervention, so that even if they don’t choose to pursue a diagnosis, they can be aware of the big issues – protect your joints, don’t do those tricks unless it is for a doctor. If POTS is in play, drink lots of water and consider getting it checked out by a doctor. The one gal talked about how her doctor told her to go to the chiropractor and, after gasping in horror, I calmly told her I would be very cautious about that. Fortunately, she had never gone, but I cautioned her to be very careful to protect the neck at all costs. I figure, if nothing else, I am planting seeds that may bear fruit in the future.
It is always and inevitably an awkward and uncomfortable conversation to have and one never knows when fear and rejection are going to enter the picture and things might get ugly, but, I have always ended up feeling a great sense of accomplishment – as if I am righting a wrong. I know that I cannot find and save every person with EDS. But, I can reach out at every opportunity, educating as I go, and, if I can help just one person, that is something precious. It is worth putting myself out there, risking rejection and anger, and looking a little nuts, because I know what a difference my little effort could make for another person.
What experiences have you had in seeing and pointing out EDS, in friends or acquaintances? How do you handle it?