As if relationships aren’t hard enough; what if you find yourself loving someone who has a painful disease like rheumatoid arthritis? You know that he or she is so much more than their disease, which is probably why you fell in love with them, but now that you are together, your spouse isn’t the only one who lives with a chronic, unpredictable disease. You do too.
In some ways your challenges are just as great. You question yourself: “Am I being selfish if I go for that run?” “Should I just leave her alone right now, she seems so tired, or should I talk to her about how she feels?” “ I’m fine is not an answer, why can’t he just tell me the truth!” “@##!!, not again, this @#@!ing disease is ruining my life!”
There is a learning curve to understanding the ins and outs of living with rheumatoid arthritis, especially if you have no history of being ill yourself. The goal is to have true empathy for your partner, or a deep emotional understanding for what they are going through, and they for you. But how to get from here to there?
- Be observant: A person living in pain quickly learns how to hide it; we’ve all heard that a pity party is a party of one and who wants to be a constant downer? So, learning to be observant without hovering is a good skill for a partner to have. Look at your spouse’s eyes and body language. Is he rubbing his arm without thinking? Is he sitting quietly at a party when everyone else is roaming around laughing? Does she look tense and tired? Do her eyes betray anxiety when she claims to be fine? Once you are able to read the signs you will be better able to react appropriately.
- Educate Yourself: “Know your enemy and know yourself and you can fight 100 battles without disaster,” said Chinese general Sun Tzu. I couldn’t have said it better myself. Spend enough time with someone with RA and you’ll soon realize that you’re in for at least 100 battles a week. Okay, maybe a slight exaggeration but I’m sure you understand my point. Educating yourself about rheumatoid arthritis independent of what your spouse tells you is a great first step. Do this by reading books, online searches, visiting the Arthritis Foundation website, going to the doctor with your spouse, calling his/her doctor with your own questions, or talking to other people you know who live with pain and/or disability.
Then take an active interest in your partner’s experience, but be careful not to give unsolicited advice. Even if you feel you know exactly what your spouse is doing to sabotage his/her health (like not exercising, eating sugar, etc.) think about how it would feel if the shoe were on the other foot.
Better yet, ask yourself, “Am I willing to give up sugar myself?” If you can answer yes, maybe you could propose doing this together. Remember, so often it’s not what you say, it’s how you say it. Conversations about changes in lifestyle are best undertaken when both parties are feeing hopeful and optimistic, so choose your time right.
Educating yourself about the daily experience of pain can be a bit more difficult unless you’ve had prolonged pain yourself. If you have, keep the memory of how you felt in your mind as you imagine your spouse’s discomfort. If not, remember an acute injury, such as an ankle sprain, and imagine what this would be like if it happened every day for months, years, without warning, and not just in one ankle but in many joints at once. This is a great way to build personal empathy.
- Listen: 98% of the time, a person with rheumatoid arthritis, and for that matter, all of us, just want to be validated. We want to be heard without judgment or the pressure to figure something out. Learning to listen with the understanding that there is no expectation for you to take your spouses pain away, to sacrifice your life, or to solve anything, will make it easier for your spouse to open up. And let them listen to you as well. Honest, open communication is the keystone to any relationship, especially one with the additional challenge of RA.
- Take Care of Yourself: No, you shouldn’t feel guilty about going on that run. In fact self-care is one of the most critical aspects to living well with a disease and this is true for being a spouse of someone who has a disease as well. Take time for yourself to take care of yourself. This will give your spouse permission to do the same.
- Respect: Respecting your spouse’s journey, while gently facilitating their ability to manage the disease is fundamental to a healthy relationship. This may mean you keep them on track with their medical regime by getting them a pill box, or by making sure that they have an hour of relaxation time after work to regroup their energy. Again, allow them to do the same for you. In this two way street, you both may end up healthier in many ways than ever before!
- Enjoy: Remember to enjoy each other’s company. Take time to spend time together doing things that are fun for both of you and can happen regardless of pain levels. Movie nights, reading time, cooking, listening to music, are all activities that you both can enjoy together. This will empower both of you, allowing you to remember that the rheumatoid arthritis is NOT in control, you are.
- SEX! I always like to save the best for last! Not that you need another reason to have sex but, did you know that endorphins, the body’s natural pain-killers, are released during sex? In fact, the production of endorphins can increase up to 200% during sex. Wow! Time to get busy! And remember, even if many positions are difficult for your spouse to maintain because of the arthritis, learning to be creative in the bedroom can be fun too.
The truth is, RA does complicate even the most loving, bonded couples. It can be savage, it is never easy, and it may be more than you bargained for. But by using the tips I’ve discussed here, and by allowing your empathy to grow, you may just end up with a stronger, healthier, happier relationship than you ever imagined.
About the author
Kat Elton has a master’s degree in occupational therapy from New York University. She is a co-owner of a wellness consulting company based out of Salt Lake City, Utah, Healthy Steps, which specializes in assisting people in reaching optimal health. Throughout her carrer she has worked, taught, and volunteered in hospitals, skilled nursing facilities, clinics, and community settings and is currently on staff at the Salt Lake City Veterans Administration.
She received clinical training in Mind/Body healing at the Harvard Medical School Herbert Benson Institute and has specialized training in biofeedback, chronic pain, and arthritis. She wrote this book because she knows that, although it isn’t easy, moving beyond disease and into a well lived life is important for everybody, regardless of their circumstance.
She has more than twelve years experience in the health care field and thirty seven years experience managing rheumatoid arthritis.
To know more about Kat, visit www.katelton.com.
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