A Beginners Guide to RA: Love & the Horizontal Tango

You're right - it is daunting to have The Conversation. But there's nothing for it, it's the only way to live with any sort of honesty and trust. When they run (and many of them well), it'll hurt, but when they stay, you'll know you found a good one.

Hi,  Ive never responded to one of these before, but what you said was so moving and touched me so deeply.. I to have severe RA in all my joints and I have psoriatic arthritis in my hands.  Iam disabled due to it. Im 32years old and walk, barely w/ a silver cane :) .

My hands are fused into fists, due to the PA(psoriatic Arthritis).   I only wish I had a ounce of your self esteem.  Me and my husband havent been able to have relations in almost 6+ months..  I'm just in so much pain all the time.  Iwant to but just cant seem to..  I cry alot about it, becuase i feel like im losing him and so not sexy, beautiful or wanted..   How do you do it?  if you dont mind me asking.. Imean feel the way you do..

   Well im sorry for rambling on about my problems. We all have them in one way or another.  I just feel so alone.. I have had RA since Iwas 3 years old and psoriatic.   Thank YOU !!!  Eunice

Hi Eunice,

I'm new here and don't know how to reply to you personally, sorry (and sorry for using your page to reply to someone else Lene). I'm so sorry for your struggle and totally know how you feel.  I mean, totally.  Sounds like you're really grieving about feeling that you've lost your sexuality, and I understand completely -- believe me, I've spent years doing that too.  I mostly haven't felt able to be sexual in a long time, up until recently.

Honestly I've gone through plenty of times when I was afraid to be touched at all, and felt like I was about 80 years old, just fragile and in so much pain.  So I know. (I have the psoriatic thing on my hands too.  A new development.  Lovely.  Talk about feeling unattractive!  My hands are like "creature from the black lagoon.")  

But lately I have been feeling like my passion and sexual longing are awake again.  I don't know why or how, and it doesn't do me any good anyway, since there's no one applying for the position!  (sorry, bad pun)  I just wonder if it will ever happen for me again.  Possibly not, and that does make me lonely...and sometimes angry.  I do try very hard to keep a fierce sense of humor about the whole thing, when I'm able to, because otherwise I'm in danger of taking that wrong turn down the narrow, claustrophobic road of self-pity.  And that's a nightmare.  I do get so low that I spend some time there, but I try not to live there.  

Is your husband kind?  Is he willing to go slow and experiment?  Will he just hold you or gently rub your back, knowing that it might not lead to sex?  It's intimacy.  That's so important.  That's what my best advice would be (although, what do I know!):  see if you can just keep in *touch* with each other, literally.  Experiment, slowly, gently, just open ended and with no goal in mind.  You have to trust him  and feel safe, feel that it's okay to be exactly how you are.  NO pressure. If you could make this a habit, some kind of gentle touching every day, maybe it would gradually enable you to feel more sexual sometimes.  Because it *does* help the pain, and the mind, and the heart,, so much.  And also, it takes a good deal of effort (boy do I know), but do remember to tell yourself that you're beautiful.  I'm sure you really are.

Heart going out to you,

Calamity Jane (Susan)

Hi Calamity Jane,

Thank you for the reply...  Ill give your suggestions a try. And yeah my husband is nice, I now need to trust him that he will be gentle and slow, ya know what I mean.. I do trust him him ahh u know LOL  

You can email me to anytime, Im a great listener and have a good shoulder , and I think I make a good friend if u need one..

Thanks again,

Eunice

I'll email u my address..

p.s.  Please don't worry about "rambling on" about your problems, and don't apologize! I feel alone too.  Write to me at my personal email if you like:  skypillar108@yahoo.com

Calamity Jane / Susan

Don't sell yourself short. You are funny and interesting, passionate and quirky, all the things you said in your self-esteem line. RA hasn't changed that. RA has just changed the packaging and sometimes how you express who you are. You have a lot to offer. We all do. There is someone out there for will think you're perfect. There will probably be several someone's out there who'll think that you're wonderful and who'll want to get in your pants - the trick is to find someone who turns your crank, too!

I can relate to all of you. I have had RA sense 97 and about two years ago ,I found

out that I also have OA. That is mostly in my right groin area and right hip and leg.

One  thing that I really have to think God for is my wonderful husband. He does everything for me,sometime too much,lol.. We only been married for two year in Feb

He'll be 80 in dec and I'll be 52 in dec . and  I also walk with a cane but it is a black one.  tks for listen 

Thanks! I really love that quote - it's become my new personal motto!

Why does your boyfriend want you to keep the RA a secret from his family? Is he afraid of their reaction? Is it that he hasn't adjusted to the situation yet himself and feels he needs time to process? I have to admit a bias here: you are the person with the disease and to me, and that means you get to decide who knows and who doesn't. Sure, consult with the people you care about and whose opinions you value, but at the end, it's your body, your disease, your life, your decision. Sara Nash has just posted a great post in which she discusses this issue of sharing your diagnosis and it may help your thinking process to read that (click here). I agree with her in that not everybody needs to know you diagnosis and I would especially advise caution in telling your employer or potential employer. However, getting through life with this or any other chronic disease needs the support of the people closest to you - your partner, your immediate family, your best friends. So much of coping relates to knowing you have this team of people who love you and who are with you in the fight and hiding something this big about yourself from people who are in your "inner circle" is a really big decision. In my experience, pretending you're something you're not, doing well when you aren't, don't have pain when you do is exhausting and you're already tired from the pain, the disease and the side effects of the medications. I spent a lot of my life trying to be as "normal" as I could and it wasn't until I decided to be honest with myself and others that I realized how much energy it takes to hide.

I'd recommend that you consider seeing a counselor - it can help you adjust to having this disease, develop the coping mechanisms that are essential to be able to focus on your life rather than the illness, as well as seeing you through this particular issue. You and your boyfriend may also benefit from seeing a counselor together to discuss the impact on your relationship and process your emotional reactions.

Well, I'm tempted to give him a smack upside the head to rearrange his scrambled brain, but I suspect that won't work.

But more seriously, your family, friends and partner will have their own reactions to your disease and just as you've had moments of freaking out, they will, too. For all their physical strength and bravado, most men are terrified of hurting women (hence their reaction to women's tears - they just can't handle the) and it can lead to them staying away in one way or another when there is a health issue. In the past, when I've gone through a period of bad flare or injury, I've had partners stay away entirely, partly out of fear of hurting me and partly, I think, because most men tend to hole up when they're not feeling well and therefore treat you like they would like to be treated. Women, on the other hand, tend to want affection and company when they're not feeling well and it's no wonder that male-female relationships work at all. However, that's a conversation for a late night with margaritas.

What to do about it? If you tried showing him the research and he's accompanied you to an appointment with your rheumatologist to discuss the issue and none of that is working, it sounds to me like you may need some couples counseling. Having a professional guide you through a discussion of hopes and fears and the feelings both you and he have around intimacy may be helpful in terms of finding out what's going on and how to fix it.

Thanks for the thoughtful reply, Lene. I'm new to how RA affects people's reactions.

In this case, my partner is okay with learning new positions so I can be more comfortable. He does not want to hurt me at all; you're right there. His issue is with infection possibilities. Since Methotrexate and Prednisone increase the risk of infection and I have a surpressed immune system, he doesn't want to take a chance of causing infection by kissing and through sex. From what I've read and heard from the doctors, with good hygeine, it should be fine and no more of a risk than anything else out there. However, my partner won't take a chance. I've tried talking with him, but there is little written evidence regarding increased infection with sex.

He is willing to go to counseling. Perhaps this is part of a larger issue.

Anyway, I wonder if anyone else has successfully navigated this issue?

Lene, I'm glad you're here to help.

Alfie

Sorry - I think I wasn't quite clear (blame too many Christmas goodies). When I talked about men being afraid of hurting their partners, I wans't just referring to physical pain, but also other ways of affecting your health, such as infections.  Given that you've discussed it with him already and, I assume, brought him to an appointment with your rheumie so he could get the facts about infection risk from an expert, counselling seems the next logical step. Perhaps his reaction stems from a deeper fear that could be explored if the two of you find a good counsellor.