_“Your illness is your family’s illness.”
When we make a commitment to someone we love, whether by formal vows or private promises, we hear that thing about it being for better or worse, but no one really expects the worse part. And then it happens anyway, one of you is diagnosed with a chronic illness like rheumatoid arthritis and you find that the words are not just theoretical, but real.
For some, it just seems to work. Somehow, the days of pain, of inability, of upheaval of the financial, physical and emotional sort just seem to nourish the relationship, making you grow closer, get stronger, become more of a team. For other couples, a diagnosis starts the once solid base eroding underneath you. Not only are you facing the new reality of pain, exhaustion and medications, but your partner seems to have checked out. What’s going on? And what can you do to heal together?
A diagnosis of RA doesn’t just come as a shock to you, but also to your partner. Just as you fear the future, so does your partner and just as you grieve, so does your partner. You don’t have a choice and have to deal with your illness, but your partner does and some choose to run screaming for the hills. If this happens, remember that this reaction is not about you, it’s about them. Having a chronic illness does not mean you’re unloveable, so mourn the loss, eat a lot of icecream and move on to someone who is worthy of you.
Sometimes, it’s a more metaphorical withdrawal. It can take the shape of refusing to educate themselves about RA, not talking to you about how the disease is affecting you, the two of you and your family or perhaps even calling you lazy because you’re sitting on the couch.
And then there’s a fear of the changes in your life. Will your partner still love you even though what you used to do together - hiking, tennis, adventure sports - may be out of the picture? Will you become a burden while your partner does all the work? And when you feel like crap and sex is the last thing on your mind for months, will they go elsewhere for intimacy or leave altogether?
It starts with education and it will fall to you. You’re the one who has RA, the one who knows what it feels like and who’s done research about it. You may think it isn’t fair that you have to hold your partner’s hand through this when you’re the one who needs the support, but you have to let that go. The goal is for the two of you to be a team again and to do that, someone has to start. Invite your partner to accompany you to the next appointment with your rheumatologist, print out especially helpful articles for MyRACentral (or other websites) and post them on the fridge. Be open about how you feel, express your frustration about the part of RA that can leave you feeling fine one day and knock you sideways the next - as an added benefit, it can quietly help your partner understand that it’s not laziness that has you napping, it’s because of RA. Don’t expect your partner to be able to read your mind - when you need help, but ask for it, openly and without resentment. Remember that even before you got RA, you sometimes asked your partner for help in opening a jar, for a back rub when your neck was tight and taking the kids when you’d had a hard week and needed an hour to yourself. This is no different.
Also remember that your love didn’t commit to you because of your ability to play golf or hike the Appalachians. Remember that even before you got RA, you divided the household chores based on talent and interest - equality in a partnership does not mean that you each do half of everything. It can mean that you pay the bills and call the plumber while your partner mows the grass and does the vacuuming.
The bottom line is this: you and your partner are team, a unit. Sometimes, rough seas mean that you can get far away from each other, get caught in the I and the you instead of the us and you need to refocus and work together to get back to where you can be a team again. This new challenge in your life can become an opportunity for a deeper connection, an opportunity for grace. To get there, you have to put your own pain and resentment aside, you have to find a willingness inside yourself to really listen to what your partner is saying. Not while composing a rebuttal in your head, but with an open heart and mind. And they have to do the same for you.
Starting back on the track of open, honest communication can take a while and sometimes you need a coach to help you get there. It doesn’t matter what kind of coach - a psychologist, a social worker or a clergy member will all be helpful, depending on your beliefs and your bank account. The important thing is to recognize when the two of you will need the help and then go get it, together.
And when you do that, when you both do the work (even if it’s cranky at the start), when you really hear what each other is saying, you begin to find the way back to the two of you as a team.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.