I confess: Glenn Frey, a cough, RA, and me

RD-FACTS-1
It’s Rheumatoid Awareness Day.

Aside from being able to sing along with many of the Eagles’ songs, I didn’t know much about Glenn Frey until I read that he died of complications from the chronic illness we have in common, Rheumatoid Arthritis. There is a lot of bad information out there about RA; it is often confused with Osteoarthritis by people who don’t know that an auto-immune disease is more complicated than damage to the joints. Many patient activists/advocates have asked that RA instead be called Rheumatoid Disease, to end the arthritis comparisons. In comments on the news reports of his death, some people blamed the medications used to treat the disease. Others critiqued Frey for not being a more vocal advocate for Rheumatoid Disease patients, despite the picture below. People lash out when they can’t abide what’s happened, looking for something or someone to take responsibility.

Glenn Frey at an Arthritis Foundation Walk in 2013.
Glenn Frey at an Arthritis Foundation Walk in 2013.

Some people do have bad reactions to medication for RA (including methotrexate, Enbrel, Orencia, Humira, and Remicade). One side effect they all have in common: they leave patients immune-suppressed and therefore raise our susceptibility to infection and our ability to combat other illnesses. Thus, a virus that might not bother an ordinary person will become a cold that goes to the chest, and then pneumonia, which for people like Glenn Frey and me is life-threatening.

In January, I had a cough. The only way to get over it and have a good chance that it wouldn’t get worse and create greater risk was to take much better care of myself than I would have done prior to the RA diagnosis I received in 2008. That means lots of fluids and an inhaler and fluticasone spray. It means staying home and resting, perhaps my least favorite thing, despite my kind spouse’s reminder that “Beds are where sick bodies get better.”

It also means going off the RA meds until the infection is gone. Symptoms return fairly quickly for me. My joints stiffen, in particular my hands, which for a writer and knitter like me, or for a musician like Frey, can be disabling. When my hands are bad, basic tasks become difficult. I can’t chop things or stir them. When it’s worst, I have trouble cutting my own food or dressing myself. And that’s just my hands. Overuse of inflamed joints can cause permanent damage.

“I don’t have time for complaining,” a churchwoman uninterested in my illness once said when I tried to explain. When you have a disease people cannot see, you hear this kind of thing, which is why we keep it to ourselves. I can’t speak for Glenn Frey, but when I am ill, I don’t have enough energy to get angry about what has been lost. When I feel better, I don’t want to waste the good moments dwelling on the bad ones. I pretend I’m okay. I pretend to myself that it’s all okay.

I practice denial.

If I sat to counsel someone else living with a chronic diagnosis, I would encourage them to express all their feelings, but I admit I haven’t dealt well with anger. I wish I could blame something or someone, because I don’t want to blame God for this thing I did not cause and no one can fix. I’d like to lash out the way the churchwoman did at me.

I’m still mad that eight years ago I woke up in the middle of one night and couldn’t bend my fingers. I’m mad that the next morning I had to call for my 12-year-old to come and open my bedroom door from the outside, which was scary for her and scary for me, too. I’m mad that while it was really bad we ate a lot of frozen meals from Trader Joe’s and microwaved bags of pre-cut vegetables instead of home-cooked meals, because by dinner time I didn’t have any “hand” left.

With Lucy when I thought I looked good, but was already sick. Mardi Gras 2008.
With my daughter shortly before I became ill.

I’m mad that steroids and inflamed joints meant that over time I lost the body I had when I first got sick; I was in the best shape of my middle years. I’m mad that I didn’t have my A-game to bring in the churches I served as a full-time pastor after I became ill. I’m mad that unless I take ridiculously good care of myself, and sometimes even when I do, I land back in the place I don’t want to be: too ill to leave the house, or hold up a book, or do anything much other than check Facebook on my phone.

No one wants to hear about this. People prefer cheerful denial. I prefer it.

Now, though, it seems that God has some work for me to do telling the stories of other people who have chronic illnesses, and how illness is and isn’t acknowledged in our faith communities. I have ideas and notes and people ready to talk to me, but I confess I’ve been resisting sitting down to do it.

I confess: it’s partly because I’m still mad that this is my story, and it’s partly because I’m afraid that when I share it, people will tell me they don’t have time for complaining.

I confess: I understand why Glenn Frey kept a low profile.

I confess: I’m telling you all this now in hopes I can work through the anger instead of denying it, even though I don’t know what being post-anger and past-denial might feel like.

I confess: I’m telling you all this so maybe you’ll understand why I go to bed when I have a cough.

*****

Many thanks to Kelly Young, an amazing advocate for those of us with Rheumatoid Disease, whose blog RA Warrior has been a supportive resource for many years. I’m grateful to be part of the Rheumatoid Disease Awareness Blog Carnival she hosts; click here to find more great posts about RD.

You’ll find an archive of my posts about Rheumatoid Arthritis here.

20 thoughts on “I confess: Glenn Frey, a cough, RA, and me

  1. I have feelings about the chronic immune disease that shapes my life. Last year I tried very hard to live at full-speed. Optimism? I had been declared to be “in remission”. Denial? By August I was not doing well. I don’t know if I will get the rhythms of work and study and rest right this year. I hope to do better, and hope for a kind of equanimity that allows both the good days and the hard days. Thanks for writing Martha – for writing this, and for writing more broadly. Love to you.

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  2. Mark

    Thank you for being open about your illness. After 20 years plus, I was diagnosed with Rheumatoid Disease. I have gone through so many issues with my body, from doctors thinking I had Polycythemia, liver disease, kidney disease, possible tumors etc. Only one doctor thought my problems stemmed from a inflammatory disease, however I didn’t test positive

    I too have experienced the comparison of other’s arthritic joint pain to my/our disease. I don’t want sympathy, but I do want an understanding that sometimes things aren’t easy for me.

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    1. Yes, there’s a difference between understanding and sympathy. I am with you. My Rheumatoid Disease is also sero-negative, and I’m fairly sure it was a missed diagnosis for a long time, until the joint symptoms were too dramatic to point to anything else.

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  3. Nancy Eisenhauer

    Thank you for your confessions and insight. I don’t have an autoimmune disease and didn’t realize what RA really means. I’ll be more sympathetic to “complainers” in my life.

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  4. Gentle hugs and prayers , Martha. Thanks for your bravery and your witness.

    My husband’s boss has an unnamed (or undisclosed) autoimmune disease, and I know it is hard for her to deal with the kinds of things you’re describing. We all need to understand better what it’s like. I hope you do write more about it.

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    1. Thanks, Kris. It’s also on my mind that people of a certain age were taught not to talk about any illness, and while I tend to think that “certain age” is older than I am, I also recognize that being raised by older parents in a particularly genteel culture continues to influence just how much I am willing to reveal. It’s one part an unwillingness to impose, and one part an unwillingness to be so vulnerable.

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  5. Dianne

    Thank you for sharing this Martha. When I first started to follow you, you had just gotten married on the top of one of my favorite mountains. Just wanted to say I admire and support you in your journey.

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  6. My husband has RA and so yes in silent ways we do things differently than most folks realize. It has made me a much more sensitive pastor and my eyes are opened for ‘signs’ that before would have escaped me. Bless the blizzard we have had… it has forced him to stay home for two straight days. ha!

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  7. Hi Martha,

    I just saw this wonderful post.

    An important post. We’d rather not be so human nor admit it.

    Of course it’s good once in a while to be angry. And it’s so justified with this vicious disease. And “confessing” helps others in several ways.

    Email me if you’d like to have this post added to the RAD Blog Carnival upcoming.

    Take care of the cough.

    Liked by 1 person

  8. Carol

    I just found your article through RAWarrior (a godsend blog for the newly diagnosed) and it was so meaningful to me. I was just diagnosed with RA in December and have been very fortunate that it was caught early and the treatments seem to be working. It is amazing to me how everyone tells me I am taking my diagnosis too seriously (because it was caught early), learning what I can about the disease, taking care of myself and avoiding other sick people if I can. Your post made me realize I am doing the right things and my emotional responses to this disease (and the negative comments) are normal. God bless you!

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  9. I have had sero-negative RD for over 35 years – not definitively diagnosed until 2006. Fortunately, it wasn’t completely disabling until then. But I had had to change careers 3 times prior to that to accommodate my physical problems. Now, I am well past “retirement” age, but without RD, I would still be able to teach and write (I have a PhD). But I hurt, I am fatigued, and I don’t think as well as I did before RD. Brain fog was NOT one of the things I thought I would be fighting.

    You are right, people don’t want to hear about it. I don’t understand those people!! Many of them profess to be Christians – but they don’t act like Christians. I’m so tired of their rejection of my reality, that I retreat and don’t say much.

    My husband helps me with cutting up food, and getting me dressed and undressed – even brushing my nearly waist-length hair and putting the barrettes on. But what will I do if something happens to him? I worry about this frequently. He is the ONLY one that truly understands. Even my children, sympathetic as they are, do NOT understand the 24/7 effects of this disease on me – and the over 1 million others with this disease.

    Sometimes it makes it hard for me to give “Glory to God for All Things” (http://www.monachos.net/library/index.php/liturgics/texts/237-akathist-of-thanksgiving-in-praise-of-gods-creation).

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