Karen and Arthritis




Relationships and RA

By Karen Ager

For Teenagers, Young Adults and New Relationships
Been Together Awhile?
Decision Making: R.A and Pregnancy

Relationships! Sex and RA

For Teenagers, Young Adults and New Relationships

Having RA affects your self-confidence. It may take you awhile to feel ready to think about relationships. I took a break from long term relationships for eight years until I felt like I had the disease under control in my own mind. I knew I couldn’t possibly have a relationship if I was incomplete myself. So I let go of my need to find someone to make everything okay, spent some time on my own and worked on myself and my esteem. During this time I preferred to just have a date or two once in awhile or to date long distance. I also eventually worked out that this was because I had a “fear of commitment.” I didn’t want to burden someone else with my disease! Have you felt like that too? 
Regardless of age, RA, or any debilitating disease, means that you have to make certain adjustments and decisions. This is also true in relationships. The biggest challenge for me was about when and how to tell a new boyfriend that they were dating a person with an incurable disease. I knew I couldn’t tell my secret too soon because “they’d run.” They didn’t have to be in love with me, but they had to at least be starting to “fall” for me. This was true especially in New York, where multiple dating is rife. For me it almost became a moral question. I started to wonder if I had a duty of disclosure as if it were like an STD.
You’ll know when to tell and when the time is right, but that doesn’t mean that the question is not constantly on your mind in the early days of a relationship. Sometimes I couldn’t walk fast enough to keep up with my date and holding hands hurt. That’s when the disease felt like a burden and a noose around my neck!    

If you’re young and have RA you probably have a whole lot of feelings about sex, your mobility, and whether or not someone will ever find you attractive with this disease. There’s probably a lot of doubt and fear in your mind about what you can and can’t do sexually right? My advice to you is that if you’re with the right person none of that will matter. Sounds like a cliché, but it’s true. You won’t have to hide your scars or your crooked bones, you won’t have to be shy because you’re not agile like everyone else your age and you won’t feel that you’re not good enough. The right person will stop you from feeling scared. If these things become an issue then he/she is probably not the one for you. When I had my hip replaced my boyfriend of five years ditched me while I was still in hospital. If I’d only taken note of all the tell tale signs in the beginning I would not have found myself in such a painful situation at a time when I needed his support the most. Don’t make the same mistakes I did!

Been Together Awhile?

Fatigue and mobility, or should I say immobility, are two of the biggest challenges that you face with RA and sex. This is when you need to prioritize your time so that you still have some energy left for your partner. RA can be so debilitating that the pain can take over your life. When this happens you tend to just focus on yourself. More rest will help you manage your disease and give you the energy you need to balance all the other dimensions in your life including your sex life. A lack of mobility just means that you have to give a little more and be creative. Joint pain can make it difficult and sometimes impossible to make love. If you are experiencing this tell your partner. They wouldn’t want to hurt you. Ask him or her to communicate their needs so that you can work out ways of getting around the pain together. Don’t leave it up to your partner to guess what is hurting you and what is okay. They need to be told!      

Decision Making: RA and Pregnancy

“You’re a sick lady. How are you ever going to be able to look after your own baby?” These are the words I heard at the age of 40 after I had been married for just a few months. I wasted 2 years trying to answer this question in my own mind. I wish someone had told me at the time that the bigger challenge was going to be getting pregnant after 40. RA was one obstacle, but my age would be a much bigger challenge than that.

There are women who have successful pregnancies with RA. So there’s a lot of hope! In fact some of the TNF inhibitor drugs are being used in the experimental stages to block Natural Killer Cells in women who repeatedly miscarry. Prednisone is also used in conjunction with aspirin for blood clotting issues in pregnant women. It’s important to monitor your cycle and to amend your medications in the pre-conception stages. I jiggered my prednisone, tried my luck at living without my NSAID (non-steroidal anti-inflammatory drug) and was given strict instructions by my Manhattan Rheumatologist about my biologic.

I had been on my NSAID for a few years and was told that it might cause implantation problems. I elected to go off this anti – inflammatory a few weeks before my husband and I began trying to get pregnant. Happily, my hypertension also disappeared after finishing this medication.

The decision to try to have a baby was a very difficult one for my husband and I. I knew if there was something wrong with the baby that this would be a cross that maybe almost too much to bear. My hesitation though, created other problems due to my age. My advice, if you’re unsure, is to just start collecting all the information from a variety of doctors. Make sure your rheumatologist and your gynecologist communicate. Stay informed! It may be up to you to join the dots between your RA, your medications and your pregnancy. So the sooner you arm yourself with the facts the better.

Currently, there is a great debate amongst Fertility Doctors about whether there is a link between auto immune diseases and fertility. It is my personal view that it makes sense for there to be some sort of a connection. Keeping yourself informed is the key. See links to articles below.  

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Share your experiences, opinions and advice on RA and pregnancy on Karen's blog.


RA Pregancy in the News:

Immune System and Infertility (New York Times)
Autoimmune diseases are ones in which the immune system ... turns against certain normal cells. . . Dr. Gleicher said endometriosis affects 1 percent of women and is believed to be the cause of in 30 to 40 percent of infertile women. . .

Unexplained Infertility (Center for Human Reproduction)
Indeed, we believe that the auto-immune literature provides overwhelming evidence in support of the fact that (auto)immune mechanisms can reduce female fertility potential. . .

Rheumatoid Arthritis - RA and Pregnancy (Health Talk)
Dr. Michael Schiff discusses RA and pregnancy .


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