Would You Like to Buy My RA a Drink?

There are times where I wish I could hide my RA and the accoutrements that come with it (like an electric wheelchair) and then there are other times where I'm grateful that my disease/disability is very visible.  Sure, dating from a wheelchair comes with a different set of challenges and dating horror stories (someday, we should have a drink and share stories), but it makes it easier to be yourself when you can't pretend you're well. I can pretend I am better than I am, but in recent years, I've worked hard to be honest about the RA extras that come with me and in so doing, discovered how very much energy it took to put on that façade. It even sort of worked for my social life.

Sorry the guy turned out to be a frog. if you have to suck up that kind of consequences, it's easier if it was worth it.

sara,

this is all too familiar ! i remember when i was dating my (now) husband, i wud constantly lie to him and myself tht i was feelin okay. i got lucky after a series of bad choices to have found him. i always used to push myself and ride on bikes with friends at 2.00 AM just to act like i have a normal life ;-). and yeah, we all pay for it the next day or days or months or years in my case !

there might b a thousand ****heads but generally there are some really good men out there too and i know soon u will find THE guy . All the best girl !

I haven't been on a date for a VERY long time, since before I was diagnosed. Now that I have multiple chronic illnesses, I waver between telling them on day 1 and holding off until they've gotten me well enough to not use that as a filter.  I'm going on a date this weekend, and I haven't told the guy about any of my health issues.  But some things are hard to hide...the oxygen concentrator in my living room, the sharps container in my bathroom, the cane and handicapped placard in my car, the inhaler and nitroglycerin that I always have with me.  Even on days when I look and almost feel normal, these things are there.  At the moment, I'm thinking I'll address the issue as it comes up naturally.  We'll see how brave I am when that moment comes.

You are such a good writer!  You captured my attention immediately and I could identify with you all the way.  Great message.  I also live in NYC but I'm Samantha + - yet, being diagnosed this year with RA really had an impact on my perception of life and life expectancy, life and work goals, and what is important to me and not important to me, as I go down this road.   I'm still working through the issues - but I'm becoming more aware of the stresses and other things that affect me and this disease.  What can I say?  It could be worse, it could be better.  But, it is what it is.  There are days when I just want to roll over and pull the covers over my head - but I force myself to plant my feet on the floor and get moving.  I have learned to treat myself to little pleasures - like - Dunkin Donuts coffee in the morning - and I don't care if it's good for me or not - I like it!  I believe if you don't treat yourself with little treats along the way - who will?  So I make sure I pamper myself - personal trainer at the gym, my hot silver convertible, - you know what I mean.

 I am a teacher and I find this is a very rewarding profession - I've had several others - but helping to mold a young mind, share life experiences that give guidance, and generally just being there, makes my days worthwhile.  And, of course, I am going to write the next greatest novel that will rock the world! 

Rock on,

Joyce

Hey Sara,

I don't date because I'm married. Haha. I just loved your story and I was on the edge of my seat.

After I thought it through I realized what you really need: a guy who really gets it and can give support and respect that you need and deserve. There is only one way to find a guy like that (and not be disappointed and stuck with someone who doesn't care or try to understand). You have to be yourself from minute one.

I hope you don't take that the wrong way; I just think you and your happiness are worth it.

Kelly

www.rawarrior.blogspot.com

Great post.. I know how you feel.. Luckily I got very lucky with my boyfriend. We talked on the phone for a few months before actually meeting and I decided to just tell him about my fibro and RA. He is a great guy and understood totally. He even took the initative before we met to look it up and research ra and learn more to understand. Now that we have met and been dating for five months he is truley a help. He has read up and talked to people about types of massage and things he can do to help me feel better when I hurt so bad. I think if you hit it off with someone, you should tell them. Not on the first date but when you are starting to spend more time together. I guess I am really lucky, I know not everyone can be so accepting. But with RA you will need to find someone understanding and willing to help. I wish you the best and hope you meet someone as I have.. Good Luck!!

I still date, sort of.  I've been with my boyfriend for six years now.  At some point, I think we got married but nobody told us.  But, we still date.  Movie and dinner, or the fancy restaurant by the water...  So, while I'm not stuck with the awful task of finding someone I like, dating is still difficult.  Getting dressed up, walking in heels, and trying to look sexy, alluring, cute, whatever, is really difficult when I feel like an old hag.  Listening to someone, showing empathy, having a great conversation is difficult when "Ouch, ouch, ouch" is drowning out any other thought floating around in my head is challenging.  And, being limited to boring dates sucks too.  No more shooting range, paintballing, concerts, skiing, hiking or long walks on the beach.  Dating is hard when I've got someone who knows about the RA and who knows pretty much all there is to know about me, I can only imagine the added stress of having such a crappy seceret. 

Kevin has been with me through every doctors visit, every blood draw, every misdiagnosis, and every failed treatment, crazy diet, emotional downfall and interrupted sleep cylces.  It's a blessing and a curse.  I am lucky to have someone to support me, but I am also burdened by it.  RA has not only effed my life up; it's effed his up as well.  And, I feel guilty for that.  But, ultimately, I am so happy to have someone there for me.  He no longer says he loves me.  He tells me, "I love you, no matter what", which is the best promise anyone could ever make someone with a life-long illness.  No matter what the medications do to me, how crippled I become, how un-sexy I can get, he's going to be there for me.  I hope everyone finds their "no matter what" guy (or "lady" for the men) too.

Oh Sara, dearheart, this post really went to my heart.  I've done the exact same thing, with awful results, several times -- though not for several years now.  

My last relationship, the deepest and most passionate I've ever had, ended after five years because he could not handle my disease.  When we met I was still fairly active, but then the RA began to get seriously worse, I became disabled, and much of my attention and focus, much of what I thought and talked about, shifted to how to handle my disease, my pain, my fear.

And he just checked out.  This man who was really the love of my life was simply not there for me at all, and had no problem telling me so.  He told me that he didn't want to take care of anyone, and that he was tired of hearing about my health -- that it was all I ever talked about (not really true).

So I lost him.  This was two years ago.  I'm not "over him" yet.  I don't suffer about it every day, but I do think about him every day, and miss him, and feel a little ashamed that I can't seem to "snap out of it."  

We had utterly fantastic sex -- passionate and exciting and constantly arousing, and I discovered that there is NO better pain relief that wonderful sex.  I used to feel good the whole next day after a night with him.  And so I still have this lingering resentment that he took that away from me!  (pathetic, I know)   At one point a few months after we broke up I actually begged him to just have sex with me, no strings attached!  What a total loss of pride.

Anyway -- I'm suspecting that I've told you this sad tale before, how embarrassing.

What I meant to say is that my disability is now pretty severe, no hiding it, and I can't "pass" anymore.  I'm trying to believe that this might be a secret blessing.  Most days I really believe that my love/sex life is over, and I work to imagine and believe that this can be okay, that I can have a good life without the wonderful dream of a good man, a soul mate, ever coming true.  (After all, it rarely comes true, even for people who are perfectly healthy!)

So listen:  don't fake it.  You're young and beautiful and smart and funny and kind -- sorry for the cliche, but you have so much to offer.  And this is an automatic screening device of course.  Any man who is turned off by the fact that you have RA is not someone who you'd want to be vulnerable with, or open to.  It's just not worth it.

So hold out for that rare good man.  I have a strong feeling that he really will show up for you, probably when you least expect it.  

You are so brave, so trust that.  Tell the truth, right from the start.  You can of course tell it in a lighthearted way, setting the guy at ease, not making a tragedy of it.  We really have to fight the stigma of living with an illness -- lord knows we have enough to deal with without that.

My heart is with you honey.  Keep writing, keep imagining ways to present yourself honestly and fully with style, heart, intelligence.  Improvise!

All the best,

Susan (Calamity jane)

Hi Sara,

I can't tell you how thrilled I was when I came across your blog.  I've often googled "dating with ra" and found some bland articles.  I cried today when I realized that I am not alone.  I've always "known" this deep down and EVERYONE I know tells me how the "right guy will come along", but reading your story and the additional comments.....I am not alone in mucking through dating with RA.  It's a comfort (much like my Birkis)!

I ended things with the "love of my life" (thus far, I hope!) three years ago.  He thought he was supportive of my illness.....but would question all my medications, accuse me of "faking" when I didn't want to do something he wanted (not true btw).  If he only knew of things that I really "faked"!!  LOL  He has now moved on and I am still searching the dating field.  I will be following your blog(s) along my dating travels.

Thank you for putting a smile on my face with your humor and frankness.  I truly appreciate blogs.

Kelly

Hi all! Here's my story:

I met what I thought was a great guy on an internet dating site. We exchanged emails, talked on the phone and finally met for dinner.

He told me he had practiced massage therapy and noticed that I was stretching a bit in my seat. Fact was, I had slept on my waaay to soft mattress and my back hurt. Apparently he is a complete health nut (and my guess paranoid) and our conversation eventually went into personal challenges.

When I shared with him about my RA, he appeared to be fine with it. I was honest although I usually do not mention the RA on a first date.

Dinner ended and he invited me out for a second date right then and there for the following evening. I left feeling happy that I had possibly met a winner. The next day he called and told me "honestly" how he had researched RA on the internet and just couldn't date me because of my illness. (Never mind that he's 10 years older than me and has high cohlesteral).

He also said that his "intuition" revealed to him that my situation would change dramatically in 5 years. (Uh....what?) After thanking him for being brutally honest and not wasting my time, I let him know how sad it was that he did not get to know me before making such a judgement call. I also let him know how shallow he was and how grateful I was to know this before I invested any more time in him. 

This is the first time I've been rejected like this and it really hurt my feelings. Not to mention his "intuition" comment that felt like some sort of a creepy hex. How rude and shallow. What a jerk, what a weirdo and what a waste of time. 

When I found this site, I became excited to know what I wasn't alone although I'm sad for the stories of others similar to mine. I do know how you feel.

I also know that there are good guys out there that will accept us and have depth of character. 

Just wanted to share.