Living with a Spouse with Chronic Illness, part 1

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According to a study presented at EULAR in June, “Partners of patients newly diagnosed with rheumatoid arthritis (RA) are equally emotionally affected by the diagnosis and go through the same grieving process as the patients themselves.” Rheumatoid Arthritis can create devastating changes within a family. It can be difficult for a spouse to comprehend the amount of pain or suffering involved in a chronic illness such as Rheumatoid Arthritis. However, adjustments are necessary and unfortunately, the disease is often cited as reason for divorce.

The response of one spouse to chronic illness

Michael tells the story of his wife Deborah, their experience with Rheumatoid Arthritis, and learning to appreciate the amount of pain the disease caused her. These are sensitive topics, but they have been brought up by readers many times. I’m thankful to have Michael as our guest today.

Deborah first noticed something felt different in her hands when she nursed our eldest daughter back in 1996. Deb was 28 at the time and, being so young, she thought perhaps the pain was just general stiffness or muscle fatigue from holding our baby for 20-30 minutes at a time.

But the pain persisted and never went away. The eventual diagnosis… Rheumatoid Arthritis.  I say eventual because Deb had dozens of doctor visits, tests, specialists and evaluations. It took a l-o-n-g time to get diagnosed and even then the diagnosis changed over time. It morphed from RA to Lupus to Fibromyalgia to fatigue and to hormones… She previously had a thyroid issue that was treated and then, oddly, corrected somehow.

We never dreamed Deb would have a chronic illness. Before the birth, Deb had few medical problems. We had been married for 6 years by the time our first child was born and Deb had completed her degree in Community Health Education. She was active in the community and taught First-Aid and CPR to daycare providers as part of their certification process and also participated on a governor’s council for setting up independent living centers in Southern Utah. She was beautiful, physically active and “looked healthy” as many RA patients do. This became one of the many challenges she faced on a regular basis.

Attempting to grasp the pain of a spouse with chronic illness

Michael wasn’t prepared to have a spouse with chronic illness…

Ok, let me be honest here. It took me years to come to more full understanding of the pains Deb suffered. I mean, I would look at her and she appeared much as she always had, healthy, vibrant, full of personality, but now she had to deal with chronic pain every day, every hour. She would rank her pain daily the 1-10 scale (with 10 being the worst) and her average number was between 4 and 7.

Thankfully, few of us can ever really understand what it would mean to suffer with pain 24/7 with nothing to alleviate it.

There was no singular event to give me insight as to how Deb felt every day. No, in fact, it was an ongoing process. The most profound moment came while I was suffering with pneumonia. Our entire family caught it one April several years ago and, as usual, I picked it up last and was hit the hardest. Every muscle ached and every joint was sore and I had the usual fever, cough, congestion that accompanies pneumonia.

It was in the midst of this that Deb could finally help me understand her pain in a way I’d been unable to before. All the aches and pains in my joints and muscles were similar to what she felt on a daily basis! This was a very poignant and memorable experience for me. Now when she said she was in pain I knew, almost first-hand, what she meant…

Stay tuned tomorrow for the conclusion of Michael and Deb’s story in Living with a Spouse with Chronic Illness, part 2. Link to Michael’s blog.

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Kelly Young. All rights reserved.

This entry was posted on Thursday, July 1st, 2010 at 7:00 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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