I'm saddened to hear this news. You are such a strong person, and I was once again reminded so during last week's Creaky Joints conversation. It's "interesting", how many logistical issues arise when living with this disease. I'm sort of in the opposite position that you were it, not terms of relationship, but in regards to where I am able to live. Returning to the U.S. doesn't seem feasible at the moment, as I would not be able to afford my healthcare costs there...and where I live, I don't have access to biologics.
Just another typical RA Catch-22.
Dear Sarah,
Thank you so much for writing about this important topic. I know it's something I think about all the time. My RA played a big part in the ending of my last relationship with a man who I loved to distraction. It's been about 3 years since we ended it, and the truth is, I'm still in love with him, don't know how I'll ever fully get over it. We are friends, and keep in touch, and he now says easily that he loves me so much, but you know, he means it in a way that's a lot different than what I feel.
The day we broke up, he said to me "All you ever talk about it your illness. I'm tired of it, and I don't want to have to take care of anyone." Honest, right? Just like a knife to the heart. Understand, I had never asked him to "take care" of me in the slightest way. What he's missing, sadly, is that all people who are truly in love naturally take care of each other.
Anyway, I'm trying my best to let it go. I'd never want to hold on to someone who didn't really want to be with me. And I've been okay being alone for a few years. But I'm not getting any younger, and naturally I do think about how nice it would be to have someone in my life. And really, let's tell the truth, I miss sex terribly. I miss being touched.
But now -- if I were to date, that would be fine. But if it was time for intimacy, there would have to be some kind of talk. The disease would have to come out of the closet, just because there are things I can't do. On the other hand, there are plenty of things I CAN do, not to mention the fact (we don't often talk about this, but we should) that sex is one of the greatest short term therapies for physical pain. I remember, when my last love and I would have a great night, the whole next day I'd be feeling great, with little or no pain. That's very hard to give up!
I'm afraid to go out there and try again, no question. And yes, it's also true that no relationship is perfect, or trouble free. I just feel like I need some kind of "game plan." When to bring it up, how to bring it up. I used to walk with a cane (a cool silver sparkly cane), which acted as an automatic "Marker." But after my recent hip replacement, so succesful, I walk fine now most of the time, and stand up straight, so the disease doesns't "show" for the moment.
But it's always there, my constant companion. Not only is the pain always a factor, but I get tired very easily -- can't begin to do things like go for long walks, much less running or anything else very physical.
So I imagine who my perfect partner would be (knowing that there's no such thing) -- someone who is very intellectual, like me, someone who loves to read, like me, and to have long talks. I need that. But it also has to be someone who would not run off scared once I bring up the RA. But as you've talked about before, the question is when to bring it up. Do you let them see who you are as a person first, get someone acquainted and put off sex -- so that by the time you explain your "little friend" they already know how great you are?
i just don't know. How would I explain my life. How would I even respond honestly to the question "What do you do?" Oh me? Well, I spend most days in bed, where I work sometimes. I do freelance editing because my body isn't strong enough to have a full time job. I often have to cancel plans if I have a bad day or a flare up. I don't go out dancing. I don't like parties because crowds of people are just too exhausting.
How do you slant that? Lie about it? (Just kidding, I wouldn't be able to.) I don't have answers to any of this, and would love to hear from other people. I think I'm a nice person, smart, funny, with so much to offer. And I also have this disease, and yes, it demands a certain amount of my time and attention. Wouldn't that scare anyone off?
Actually, one thing I do think about is the possibility of being alone from here on out. If that going to be what happens, I want to face it, and I don't want to fold up in fear or depression. Lots of people do not find their perfect partner, even though its what we all want. If I don't find that, I want to be okay anyway. I want to be a good friend, to help other people, to do my writing, to find something to enjoy in every day of my life.
I think it's possible. But yes, to be honest, I do long for that other person, someone who '"gets" you, who makes you laugh, and yes you gives you fantastic sex. Why shouldn't we be honest about wanting and needing that?
What do all of you think? is anyone out there in a relationship? If so, how does your RA fit into that? Sarah, I'm so sorry that you got hurt. You know, when we take that leap and fall in love, it's a guarrantee that at some point you're also going to hurt. They seem to go together. But I still want it. I want one more chance.
Thanks again Sarah. I hope so much that you find someone who is good enough for you. You're younger than I am, so I'm sure it all still feels very immediate, very hurtful. I feel sure that you'll find someone, because just from reading your wonderful posts, I can tell that you're a great person.
All best,
Susan
(Calamity Jane)
p.s. I think I've said a lot of these things before. Sorry for repeating myself. Also, I know my posts are really long. Sorry again -- I live alone, and my mind is just full of words all the time!
Thanks, Susan. It is crazy and hard to be out there on this journey by outselves (though I guess it means I don't have anyone else to worry about either, on the other side). No worries about writing a bunch-isn't that what this site is for? Much of you write applies to so many people. I miss intimacy, too. One person on my Facebook page wrote a great quote from Harold and Maude that I think was great- 'go out and love some more.' It's what I intend to do, regardless of the outcome. Take care, and thanks for sharing so much of your own story-Sara
Maybe Jane, you would fine someone who has RA like yourself and would like a companion also. At least he would understand the problems associated with it.
The possibility of both of you being down or in a flare at the same time, would not be likely. So, you could help one another see the bright things in the days, and avoid the dark things in the night---the doubts, the fears, the isolation. I'm
finding my companion has developed it also, and is now more understanding than before. We rest together, we read together, we watch TV. It is nice now.
Still we both worry about the future. It is a good thing we've saved over the years and might be able to hire help when we need it. Sure, there are clouds in the sky some days, but the sun always comes out. Have faith.
Ah, this made me sad. I was really hoping things would work out. :( Thanks for sharing this personal part of your life with us. It's funny how even though we don't know someone personally, through blogging we can still be out here cheering each other on. So here's to cheering you on to the next adventure in your life!
Thanks, Cathy. It's true- and somehow, telling everyone I know from the online world was something I put off doing because I knew how many people were rooting for me, but at the same time, I wanted to share this because so many of you have offered so much support and encouragement along the way. We are a family, even if we've never met. Thanks for your kind words-
Sara
Sorry, Sarah. Your positive attitude will get you through. At least you had great beer and chocolates in Belgium and didn't get stuck married to a guy who isn't strong enough to take the plunge. Hang in there!!
Tilly- you make wonderful points! I had tons of great beer and chocolate and yummy treats, got to see a country I hadn't been to before, and thoroughly enjoyed myself, believe it or not. And yes, it's true- as I said to him several times, I don't want to be with anyone who doesn't know for sure that this is what they want. I'd rather be single than settle!
A great way to soothe the pain of arthritis symptoms is to get a chiropractic adjustmetn. If the pain is not too severe, adjustments are a great way to help with pain as long as your muscles are not too tender. An adjustment als helps release tension associated with joint stress. I suggest you try to find a local chiropractor who is familiar with patients who suffer from rheumatoid arthritis.
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Bummer. I'm sorry to hear about your breakup. But very inspired by your willingness to move so far away with all of the complications RA brings with it. You are definitely an adventurous soul and are destined to have more adventures in your future. Take care
Liz
Thanks, Liz- much appreciated. Sara