The Spoon Theory

Apropos of our discussion regarding helping people "get it" here is the Spoon Theory alluded to by Wonky Warrior in her recent comment. It's from the blog But You Don't Look Sick. This is the best attempt I've seen at explaining the impact of chronic illness. Please read this.

An amazing RA Blog from Wonky Warrior

I'll have a new post up soon. I'm stewing on one. I've been a bit distracted with a flare in my elbows (which has limited my computer time) and with getting all my duckies in a row to go on Humira, my first biologic.

In the meantime, you must-must-must read this new blog. I suggest reading from the first post to the present to get the full effect. Ms. Wonky is indeed a Warrior. I laughed til I cried and sometimes just cried. Incredibly funny and moving and inspiring. Blessings on you, Wonky. Saving my best prayers for you.

Angry? You bet.

Here's a great post from RA Warrior. If you're a warrior, you'll be reassured that your anger is normal and that the studies suggesting an RA personality are bunk. If you're a friend or family member, perhaps you'll understand a little how autoimmune arthritis and the resulting fall-out in our lives can stir up emotions that you aren't used to seeing in the person you love.

Become an RA Warrior and Help Spread Awareness About RA

Those of us battling RA and related diseases owe a huge debt to Kelly at the RA Warrior website for her amazing efforts to raise awareness about autoimmune arthritis. Not only does Kelly gather the latest research on autoimmune disorders and place it in context, she also works tirelessly to challenge skewed and inaccurate portrayals of RA in mainstream media. (See more about the RA Warrior campaign requesting that Women's Day Magazine get it right by clicking here.)

Kelly also maintains a very active Facebook page where folks living with RA find hope and support. Kelly does all of this while waging her own battle against RA. She is my heroine and a huge role model for all of us who seek to live a passionate and hopeful life with chronic illness.

You can help by entering RA Warrior's contest. It's as simple as a post to your facebook page and/or blog. Please help us raise awareness about RA! It will make a difference for those of us who are warriors every day.

Why good people say stupid things

Last night someone posted a comment on my recent post about the seriousness of autoimmune arthritis and the frustration we feel at those--from family members to strangers--who don't understand or support us. You can read the comment here, but the gist--as I read it--is that if we just patiently educate people, most will understand. Those of living with RA/PA/AS and related diseases know that it's not that simple. I started to reply in a comment but it was turning in to a rather lengthy post. So here is my response to all those who think it's just a matter of education:

I wish it were as simple as you describe. But if it were, the blog roll at the right would be much shorter and 11 other women would not have found so much resonance in my post. The problem goes far beyond ignorance. Explanations alone do not suffice. Some of the women who commented have been educating others about autoimmune disease for decades--to no avail. "It's just a little arthritis" is just one of the comments we hear on a regular basis. You can see ten more rude/oblivious comments that people have actually said to me at this post: Cancer and Crow's Feet: A Lesson in What Not to Say.
 
It would be one thing if we only heard these things from strangers. But sadly even people who care about us do not often take the time to really learn what we are going through. For many of us, the disease is invisible. So unless you live with us, you will generally see our best "face"--the face we put on when we need to go out in the world. You won't see us lying awake at night in pain, struggling to do simple tasks, running out of steam part way through a very long day. So even friends and extended family don't see the real face of autoimmune arthritis. Then, when we say "no" to something, they think we're being difficult or lazy or antisocial or flaky. It's fascinating to me that people who have known me for years find it easier to assume there has been a change in my character than a change in my physical ability.
 
With strangers and acquaintances, or people who meet us for the first time after our diagnosis, it's worse. They have no "old Kris" to guide their interpretations of my behavior so it's much easier to jump to character flaws instead of learning about the disease.
 
I've been wondering why this is so hard. Why can't people grasp the medical facts of our illnesses and translate that into compassion? I think the problem has something to do with the human reluctance to engage suffering. To really understand our situations--why we can't travel on the same schedule we used to or why we can't make that 8 am meeting--people would have to understand and acknowledge our suffering. Most people don't want to do that. To authentically engage someone else's suffering when there's nothing you can do about it takes a certain emotional and spiritual fortitude that not everyone has developed.
 

I minister in a neighborhood saturated in suffering. For some folks who come to serve with us, it's too much. They are fine if they can write a check to support our free community dinners, or if they can wash dishes in the kitchen. But if you ask them to sit down with someone very unlike them and really hear their story (which will contain a dose of suffering that "middle-class" folks can't understand or even imagine), they look like deer in headlights. Some become frustrated because try as they might they simply can't understand the lives of those living in poverty. They can't fix it. And they can't even fathom it, so they blame the victim or shrug their shoulders and walk away. It's a relatively rare few who can offer love and validation to people whose lives they can't understand. But if you do that long enough and lovingly enough, you do begin to understand--at least a little. Unfortunately, few are cut out for that kind of persistence in the face of suffering.

 

I think something similar is at work in most people's responses to those with chronic illness. When people see suffering, they want to fix it. So they offer up ridiculous advice and cures. Or, realizing they can't fix it, they find a way to disregard it. Sometimes they resort to character assassination. The "get a job" response to someone living in poverty and addiction has a cousin in the "pull yourself together" response that many of us encounter on a regular basis--even from those who love us. Other times they attempt to diminish and deny, as in: "it's just a little arthritis." Sometimes these inane responses may even be a misguided attempt to make sense of what we tell them. The person who says "Oh, I have rheumatism in my left knee" may intend to show understanding. Of course, they don't know what they don't know. And their comment becomes a punch in the gut that denies our experience. These are just some of the reasons good people say stupid things.

 
If the answer were education--and patience on the part of those who suffer--this world would be a different place. There would be a safe and warm bed for every homeless woman in our city, little children in West Central Spokane wouldn't turn up at our church's coffee hour in their underwear because they are hungry, and people facing the fight of their lives against disability and early death would not have to bear the judgments and disregard of those who don't get it.
 
This is not to say we give up. We must keep speaking up and speaking out. But no matter how clearly we communicate and educate, people will misunderstand and disregard us. And for the wounds we suffer--from our diseases and from people who don't get it--we have one another as balm. We have, in each other, other human beings who do understand what it's like to have our own bodies turn against us and turn our lives upside down.

A week in the life of an arthritis patient

One of the surprises I've experienced living with autoimmune arthritis has been how dismissive people can be. It's just a little arthritis, people say. Well, here's some tangible evidence of how a little arthritis changes a life.

These are the new additions this disease has brought to my life--one week's worth:

Supplements, pain meds, sleep meds, and chemotherapy. Yes. Chemotherapy. That little vial is methotrexate--a drug which was developed from mustard gas and is used to fight cancer in higher doses. That's how serious autoimmune arthritis is. What you don't see: the pneumonia and shingles vaccines and the TB test I had this week in preparation for adding another med after some "wait time" to give the vaccines time to do their work. In three weeks, I'll begin injecting Humira every other week in addition to weekly methotrexate.

I'm grateful for every thing in this photo. I have insurance that helps me pay the doctors, labs, and pharmacies. And I'm thankful for advances in medical research which have created new treatments that may reduce my disability and add years to a life that otherwise would be shortened by the chronic, systemic inflammation that accompanies autoimmune arthritis. Compared to those who began their fight with arthritis decades ago, when treatments were few and less effective, I have a good dose of hope to go with all these meds.

If I could add one thing to this weekly routine, it would be the understanding and patience of friends and acquaintances. It's hard to understand if you haven't fought the day-in, day-out battle that arthritis brings. Arthritis is real. Arthritis is serious. The kindest thing you can do for me, or anyone else dealing with this disease, is to treat it like it's something--not nothing. It is most definitely something.

The Long View

Last Sunday, rain clouds skirted us all day before breaking loose their burden into this unseasonably wet and cold spring. The skies mirrored another kind of weather: how I’ve been feeling—physically and, to some extent, emotionally—as my pain has worsened again.

Since being diagnosed with autoimmune arthritis, one of the hardest things to accept has been how freaking long it takes to measure progress. At first, I was puzzled and irritated when the rheumatologist scheduled my regular appointments two months apart. Didn’t he understand how much this disease was messing up my life? And when I had my “Mac truck” flare (after 6 weeks of apparent drug-induced remission) he took it in stride, called in a prescription of prednisone, and said he’d see me in a couple of weeks at my next scheduled appointment. I could barely walk. For him it was all in a day’s work.

His relaxed approach to what felt like an emergency bothered me until I realized it just takes that long. With the medications used for autoimmune arthritis—DMARDs and biologics—it takes one to two months before you know if they are doing a damn thing. And overlaid on this can be an ebb and flow of symptoms that are unrelated to any conscious interventions by patient or doctor. (For more on this, see RA Warrior’s description of common patterns of RA). In the midst of wondering whether a new treatment is working, a few good days raise your hopes. A string of bad days dashes them.

Six weeks ago the PA increased my dose of methotrexate. Give it a month, he said. And at five weeks, I started feeling better. Not all better. Not like the miracle of my first response to the metho. But I was taking less Vicodin, sleeping better. I dared to think it might be working. Maybe one more little tweak could get me back to near-remission. Maybe I could avoid adding a biologic and just switch to injectable metho which gives you 30% more punch for your dose compared to oral.

I felt better for several days—just long enough for me to start trusting it—then the pain and fatigue ramped up again, right back where I started. At my next appointment three weeks from now, if things haven’t gotten significantly better, the doctor will likely recommend adding a biologic.

The unpredictability of this disease has been teaching me about living in the moment. And yet there is a tension between being present to the “now” and living the long trajectory of this disease. It reminds me of how the stories in our Scripture often have integrity of their own, but find their depth of meaning in the narrative arc of the larger Story of God and His people. A good day may mean the beginning of remission, or it may mean nothing. It’s only in retrospect that the story begins to take its shape. But like many of us, I’m addicted to the long view.

A few weeks ago, I found a therapist who specializes in chronic pain and illness. (I’ve decided that I stand the best chance of living well with this disease if I tend every aspect of my health—from dental to mental—with consistency and thoroughness.) She asked me to start charting my pain against things like sleep quality, physical activity, and emotional or mental stress to see if I can uncover any patterns to the pain. I’ve tried this early on and found paying close attention to the ups and downs in my disease activity tended to tip me into depression. My therapist has encouraged me to try again, but to do so with as little expectation as possible. That is, to treat this as an experiment which may, or may not, reveal helpful conclusions. The challenge, then, is to avoid trying to make sense of every moment as it happens. Right now, I’m just gathering data.

We are creatures desperate for context, for meaning. Diseases like autoimmune arthritis don’t follow a play book. My challenge at the moment is finding a way to be proactive without craving a long-range plan. More and more, I’m finding moments where that seems possible. I count as progress those times I’ve found a certain peace in lying awake, sleep held at arm’s length by pain, the night stretching on and on. After I’m done fretting about what the lack of sleep will do to me the next day, after I’m done being pissed off—again—that I have this disease, and after I release—again—the worry that this pain is the outward sign of the inward destruction of my joints, after all this, I’m sometimes able to simply be in a way that I’ve never experienced before. In those moments, my pain doesn’t need to have meaning. It simply is. And there’s a trust that this long night contributes somehow to the arc of my life and to the way this life fits into God’s Story.