Living with a Spouse with Chronic Illness, part 1

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.

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

17 thoughts on “Living with a Spouse with Chronic Illness, part 1

  • July 1, 2010 at 9:11 am
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    Really put things into perspective for me to look at it as an outsider looking in.

    Reply
    • July 1, 2010 at 9:29 am
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      Good Jill, I think Michael is doing an important thing by beginning a valuable discussion.

      Reply
  • July 1, 2010 at 9:37 am
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    I can’t wait to read Part 2 tomorrow! Understanding from a spouse is so comforting. I fear that my RA will have to get really bad before my husband can truly understand it or rather “see” it. He tries to. I know it’s difficult. I mean, most of us don’t “look” sick. This is truly a monstrous disease. Kudos to Michael. Thank you!

    Reply
    • July 1, 2010 at 10:38 am
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      Yes, I guess that is what is at the root of it – looking the same on the outside.

      Reply
  • July 1, 2010 at 12:03 pm
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    Thanks for an article many of us can understand. I often think my husband has the “harder job” in seeing me hurt and not be able to do anything about it. Too frequently, however, we, the patients, do not give our spouses enough freedom to be able to seek the support or emotional help that they need. It’s vital to the marriage that we make sure they have a “safe place” to share their worries and concerns, and that we understand the burdens they feel. For example, it may not just be being the sole breadwinner, but also having the job that gives us health insurance. I look forward to part 2!

    I actually have an area on our web site, as well as separate groups for men with ill spouse and women with ill spouse at http://restministries.com/category/r-u-a-patient-or/ill-spouse/ if anyone feels some online support would be helpful.

    Keep up the great posts. I cannot keep up with YOU! 🙂

    Reply
  • July 1, 2010 at 12:20 pm
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    Kelly I ran across this article about spouses and RA or Arthritis. I have been thinking of how my husband as acted around me. Remember I am still sero-negative, but have swelling and fatigue with the full like aches. I know I pretty much look normal. I feel guilty when I come home from work and don’t want do other things but crash.I felt like my husband was mad at me because I had RA. We finally had a good talk. He said he was angry for me and felt helpless at the same time, not being able to make it better for me. I was so glad I asked. Any way I ran across this article plus below the article their are other articles to click. I thought they were pretty good!
    Thanks Kelly, you are a gift. Stephanie

    Reply
  • July 1, 2010 at 12:27 pm
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    Thank you, Michael, for sharing with such honesty. I look forward to Part 2. I already have tears in my eyes, and will be sharing this with my husband of 29 years-25 of which I have suffered with RA, and RA-related complications. Thus, my husband has suffered right along with me. So much is familiar to me, including the difficulty and suffering , waiting to getting a correct diagnosis.

    Reply
  • July 1, 2010 at 6:47 pm
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    Thanks, Michael, for telling your story. I’ve been anxious to read it since you first mentioned it. I think we’re all much better people when we go through the process of “being” in someone else’s shoes. I applaud your courage to write this.

    Reply
  • July 2, 2010 at 5:01 pm
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    “Those who do not feel pain seldom think that it is felt.”
    Dr Samuel Johnson

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  • July 5, 2010 at 6:34 pm
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    My friends, I’ve read all of your comments to date to both Parts 1 & 2 of the post. Many of your comments have moved me to tears. I struggle with what to write here other than to thank you.

    I can tell we share very similar experiences and there’s a validation in our sharing. Another thought occurred to me and that is how I felt completely helpless as a spouse to relieve Deborah’s suffering and I’m sure many of your spouses feel the same. It’s a frustration that we have to work through mentally as to how we respond. My thoughts on this alone could be another post…

    Thank you again and my prayers are with you.

    Mike

    Reply
    • July 5, 2010 at 9:36 pm
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      Thank you, Michael. I really appreciate your effort to help others by telling Deb’s story here.

      Reply
  • January 4, 2012 at 12:35 pm
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    I as diagnosed with RA 4 months ago (with symptoms for past 6 years) and it’s been a rollercoaster ever since. My husband has been so supportive and so very helpful. I feel badly that he has been having to do so most everything for me while we try to get my RA under control. I forwarded this to my husband’s email hoping it will help him understand the road we are on. Thank you for posting!

    Reply
  • May 7, 2014 at 4:28 pm
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    Well my wife has had RA for about four years,she also had a stroke brought on by RA.We as a family still have not excepted this decease. It has be hard in everyone. Now I look at the date if 2010 on here and realize it us old data.

    Reply
    • October 20, 2014 at 5:25 pm
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      Hello Pete,

      While the post is over four years old I still receive emails and comments about it today. I hope that my experience may be helpful to others. All the best,

      Mike

      Reply
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