Living with a Spouse with Chronic Illness, part 2

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Understanding a spouse with Rheumatoid Arthritis

This is the second part of a story about a spouse with Rheumatoid Arthritis. In Living with a Spouse with Chronic Illness, part 1, Michael described the surprising process of learning to recognize the amount of chronic pain that Rheumatoid Arthritis brought his wife Deborah. He explained that it was difficult to accept that his spouse suffered from Rheumatoid Arthritis because she did not look sick.

In part two, Michael gives helpful words to spouses of Rheumatoid Arthritis patients taken from his own experience with Deb. These are things that he wished he understood sooner. I hope we will be able to share this story with many other spouses of patients or other family members. There is an email this post button at the bottom of the page.

Advice from experience about a spouse with chronic illness

Our lives changed dramatically from being spontaneous to continually making trade-offs like, if we do this then we can’t do that. If we could go for a walk, she wouldn’t have energy to go to dinner or a movie.

Just the simple act of myself or others greeting Deborah as we often do with a, “Hey Deb, how are you?” could open a Pandora’s Box of reactions. I could barely comprehend it. Eventually she boiled her response down to a simple, “I’m fine.” But those of us who really knew her understood. “Fine” meant she’s dealing with unbearable pain, but she’s still at church, with the kids, running errands, outdoors at a park, and it’s tough.

Because she looked “fine” on the outside friends would try to be spontaneous and invite us to dinner, gatherings, parties or visits. They would ask if she could take care of their kids for an afternoon, or perform other acts of service when, for Deborah, just getting through the day was enough of a challenge. We adjusted much of our marital life as well with me taking on much more of the daily household responsibilities and limiting our intimacy as a couple. RA was the disease that changed the entire dynamic of our family and we slowly learned how to work and accommodate.

This is a key point for those affected by RA directly or as a loved one. Your lives will change. Though you may not see the ailment, its effects are as real and as life-changing as someone having another severe illness, loss of limb, a permanent handicap or some other daily medical challenge.

The pain is chronic and there is no cure. Some days are better than others as the pain arrives in waves and often, on the low-pain days, Deborah would be almost back to her old self again. But flare-ups would regularly happen and drag her back down again, sometimes for weeks.

A word about flare-ups too – for those of us who love the sufferer – when they are doing “better” we may think they have finally been cured and the RA is gone. This will play with your mental stability, because the flare-up can pull them down to even worse than they were before. On some occasions Deborah’s flare-ups were so severe that she would be bed-ridden for days.

As challenging as RA can be, you will still find days full of joy, laughter, fun and love. Yes, the pain is constant, but you and your loved ones can work together to manage it. Talking regularly about your pain levels openly, to validate what is happening and without desperation will help the rest of us come to an understanding of how you are suffering.

Remember that to the rest of us you “look” wonderfully healthy, even glowing at times. We need reminders, yes – even long-time husbands like me – that you’re in pain. We want to connect with you, help you to not feel alone in this battle and show our love through understanding things that are unknown except to the sufferer.

Deb tried every possible remedy – dietary changes, environmental therapy, exercise, acupuncture, massage, water therapy, naturopathic treatments, hypnosis, Enbrel and all sorts of other medications – all of them to little avail. She succumbed to many of the side effects that are “only suffered by a small percentage of the population.” Eventually the endless doctors and visits and tests became so burdensome and she simply gave up all attempts for relief.

Then end of Deb’s chronic illness story

Deborah passed away from breast cancer in 2008. She and I believed that her RA pain masked what she might have noticed otherwise. A 5 cm tumor is considered very large and dangerous. Deb’s tumor was 10 cm by the time she was diagnosed.

Thank you to Michael for the courage to tell Deb’s story here. He told me that the ways RA affected their life became clearer afterward. He wished he understood better in the beginning. I have no doubt that Michael’s telling of Deb’s story will help other spouses of Rheumatoid Arthritis patients to grasp more of our experience of living with RA . Link to Michael’s blog.

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Kelly Young. All rights reserved.

This entry was posted on Friday, July 2nd, 2010 at 8:52 am and is filed under Living with RA / Managing RA. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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