Lymphedema and dating

Hello,

How many of you have found it to be difficult to approach someone that you have been dating or someone you want to start a relationship with about your lymphedema.  I have lymphedema in both legs and also in my right hand.  I find that it affects my confidence level especially on those days when the swelling gets bad.  I have it under control enough that when I wear pants, it's unrecognizable....but I do have concerns about intimacy and having this condition.  Does anyone have any advice to give or stories to tell?

Nicole

Hi Nicole,

I have lymphedema in both my legs, and lipedema in legs and arms. I am still obese so it's easily just passed off as fat. I haven't "dated" a lot of men, which I guess I'm lucky. I met my boyfriend online and for some reason before we even met we were talking and he jokingly said he had awesome genes and I said I had messed up genes. He asked why I said that and I told him about lymphedema and lipedema. To my surprise he then Googled both so he could learn more about them. We've been seeing each other since March and he is very understanding, perhaps a bit too nagging about making sure I wear my garments and stay out of the hottub. But I've told him I'm going to have my lymph therapist teach him massage so he can "help with my treatment"...aka I can get massages from him more often. He already knew what I looked like, and liked who he go to know through conversations, so I was ok with being open about my legs. I had already been fine with showing my legs in public, like at the pool or beach, so him seeing them in the bedroom wasn't a problem at all for me.

Thanks for replying   As you may have guessed, I'm still looking for that special someone and it's difficult figuring out how to approach them about my lymphedema.  Unfortunately, I'm not as confident as you are like at places at the beach or baring my legs out in the open.  My lymhedema is to a severity that my legs look cosmetically disfigured....still dealing with just having to cope with that reality.  You are very blessed to have found someone who is not only accepting of your condition but supportive as well.  I always felt that I would have to meet a man with lymphedema as well in order to feel comfortable with him AND it.  Too bad the gene for lymphedema is one-sided affecting females more than males lol   Thanks again for replying and take care!

Nicole

Hi Nicole,

I was self conscious too but with some time  while dating someone recently, I was able to trust and he was very accepting.  I will tell you though that we had to negotiate having the light on or off though!  That may be too much information but as the other writer said, as you get to know someone and they get to know you, the rest usually figures itself out.  It is hard though especially if your lymphadema is quite severe. We tend to notice it so much more as well.

Thanks for your input!  Yes, it's tough to get over that initial hump of insecurities....but for those of us with significant lymphedema...who can blame us   I'm still looking for the right person who be as accepting as your special someone, but I'm also prepared for the possibility that it may not happen.  I still believe in keeping my head up and taking pleasure in the simple things in life

Nicole

It is very tough......I am no longer dating the man I was (who was very accepting) so dating again is scary.  I am also contemplating weight loss surgery and this is why I have started viewing this site and seeing how others have done.  I was just diagnosed with lipedema last year but my weight has steadily creeped up since this started apprx 3 years ago.  I do not want to be disabled and am unsure what to do.

I agree with you too that life is not just about finding "the one" and that happiness can come from so many directions.  Life does not always turn out the way we thoght it would and we can adjust and enjoy life and embrace joy in others ways.

Blessings to you in your journey,

Jennifer

It's always a difficult question - because our own perception of ourselves is our biggest obstacle, in my opinion.  In my case, my LE is in both lower legs, but has improved a lot as I've lost weight. I looked (and felt) like the Michelin man when I was having MLD to reduce the edema and was bandaged from toe to thigh.  Definitely didn't feel sexy in any way then. Thankfully,  I can now wear regular medium compression socks, and I basically look like I just have fat, creased ankles and slightly puffy legs and feet.  So I wear trousers and full coverage shoes and it's not at all noticeable when I'm clothed.  Would I like to wear pretty, short dresses (or at least something that's around the knee)? Yeah... I still hope I might get there, but even if I don't, I've become pretty comfortable with where I'm at.

I've recently become involved with someone who seems to think I'm pretty hot just the way I am and didn't even notice... even when things eventually ahhh heated up.  I didn't bring it up until I had to put my socks back on when getting out of bed (I can't be vertical without them, unless I want my legs to balloon up).   It was no biggie for him (frankly I was more worried about the saggy skin I have in other places, but that doesn't seem to be an issue either). 

My advice, for what it's worth, if they know what you look like (and with online dating I make sure they have recent photos), and you take it pretty easy before pulling the intimacy trigger, then (if they're any kind of decent human being) it shouldn't be an issue.  Everyone has their own baggage, it just may not be as visible as LE legs.  I think if you accept yourself the way you are, and are matter-of-fact about your condition, then it's likely not to be a big deal for someone who has begun to care about YOU.

That said - yours may be much worse than mine, so proceed at your own comfort level.

Thank you sooo much for sharing your story.  It helps alot just to know that similar issues have gone through other people's minds as well as my own.  Of course topics such as treatment and long term care are important, but what about other underlying issues or even the psychological ones that don't get brought to light about this condition.  I am currently working on reducing my lymphedema and my weight.  Of course the two go hand in hand.  I am still learning to accept myself as I am even as I continue on this journey.  Again, thanks for your response!

Nicole