It’s Lonely Having a Weird Disease

July 23, 2011 at 4:41 pm (Uncategorized)

I was listening to a low-brow mystery in bed last night. I was feeling lousy. The unholy trinity of neurosarcoidosis symptoms—vertigo, short periods of blindness, and a piercing headache—had decided to pay me a visit. After several years, I’ve learned that the best way to get through these bad spells is to distract myself. Mysteries—the less literary, the better—are particularly good at taking my mind off the electrical storm in my head. Stories of mayhem, madness, and destruction keep me from dwelling on my own pain.

Suddenly, through the haze of pain and the fog of pain medicine, I heard the narrator say, “sarcoidosis.” What? I rewound the book and listened more carefully. There it was again. Sarcoidosis. I hadn’t imagined hearing it. About midway through Bare Bones, Dr. Temperance Brennan (a forensic anthropologist who solves all kinds of crime by analyzing skeletal remains) discovers a corpse with sarcoidosis. Her colleagues think this murder victim had leprosy, but the wily Brennan correctly diagnoses sarcoidosis.

I bolted upright in bed, forgetting for a moment the headache’s roar, and hollered to my husband, Jay, “Oh my God! There’s sarcoidosis in my book!” I felt strangely happy that “my” disease had popped up in a bestseller. I didn’t even care that when she went on to explain sarcoidosis, the intrepid Dr. Brennan minimized the disease in the same way that drives me crazy when other people do it. She tells her colleague that most of the cases are benign and cure themselves, that most people with sarcoidosis don’t even know they have it until a routine chest x-ray illuminates the disease’s presence.

Jay came into the bedroom. “Wow! That’s really cool,” he said. He didn’t have to ask why I was excited at such a passing reference, or why I should care about any mention of my disease at all. Jay gets why it felt like a small vindication to read about sarcoidosis in a book that isn’t a medical textbook about granulomatous disorders. He knows how lonely it can feel to suffer from a disease that nobody knows or cares about. We’ve both heard too many times from well-intentioned acquaintances, “Now what is it that’s wrong with you/her?” or “You/She don’t really look that sick” or “When are you/is she finally going to get well?” They’re not malicious in not being able to recall the weird name of my weird illness. Sarcoidosis truly is a tough word to learn and remember, especially if you don’t have to say it. They’re not calling me a faker when they tell me I look perfectly healthy, or a malingerer when they ask when I’m going to be done being sick. After seven years of serious illness, most people think I should be either dead or well. That’s because my disease doesn’t follow the script of better known ones like cancer.

At the beginning of our voyage to Chronic Town, we were no different than these blundering acquaintances. I’d certainly never heard of sarcoidosis until I was diagnosed with it. For my first weeks with the disease, I took to calling it “sarca-whatever” because I couldn’t remember the odd word for the “condition” I was actually happy to have. Yes, you heard that right. I was too busy being relieved that I didn’t have lymphoma, which is what my doctors first thought was the reason for my terrible fatigue, chest congestion, and enlarged lymph nodes, to bother worrying about this sacra-whatever. My doctors told me I’d dodged the proverbial bullet by having sarcoidosis instead of lymphoma. They assured me that though I’d keep feeling tired for a while, and my hacking cough might persist, eventually, the sarca-whatever would spontaneously remit—and I’d be able to go right back to being a new mother, an emerging writer, and a dutiful wife.

If only. My sarca-whatever did not go away on its own accord, as promised. Instead, it devoured me. I turned out to have the chronic and aggressive form of the disease that doctors seem to forget exists, one of those 20-40% of cases (like so much of sarcoidosis, there’s a lot of uncertainty around these numbers) that doesn’t spontaneously remit. Sarcoidosis moved into my heart, my liver, my brain, my joints, my skin, and my bones. In an attempt to arrest its potentially deadly course—or at least stall it—my previously optimistic doctors threw an increasingly toxic stew of medications at it, and into me. Ironically, I ended up getting two of the same chemotherapies that are used to treat lymphoma. With lymphoma, at least there’s a chance these drugs will cure it. With sarcoidosis, however, the hope seems to be that the chemo might “manage” it.

I’m not trying to get into a “my disease is worse than yours” contest with lymphoma here. Everyone in Chronic Town has a lousy sickness. There’s no profit in thinking that sarcoidosis is more dire than some other disease. It sucks to be chronically or seriously ill—whatever the cause. Sickness is lonely. It threatens to take away everything familiar—ultimately your very life, but first your work, your body as you know it, the dynamics of relationships, and your time. Whether it’s more lousy to be inflicted with a disease that no one’s heard of isn’t something I’m really in a position to evaluate, having so far (thankfully) avoided the poster children of cancer or muscular dystrophy.

What I can say for certain is that I wish more people knew about sarcoidosis. Doctors, first and foremost. But the rest of the world, too. Like I said, it can be isolating to fight for your life. I think it’s extra isolating to be fighting for your life against a foe that no one else has ever seen, thought about, or understood. I imagine it’s something like having a son in the special forces. You wave goodbye as he heads off for…where? All the other Moms are tying yellow ribbons around trees and sending care packages off to Iraq or Afghanistan—and hopefully deriving at least a little support from knowing they’re unified against a common enemy—and you can’t tell anyone that your boy is in North Korea or Saudi Arabia, or even that he is fighting at all.

The disease equivalent of Iraq and Afghanistan is breast cancer. The campaign against breast cancer is one we’re all aware of and all engaged with. That’s a good thing. We should be working very hard as a society to fight breast cancer. I don’t begrudge a single dollar spent on breast cancer research, and I show up to support the Race for the Cure every year I’m well enough to be out of bed and walking. I just wish sarcoidosis had its own version of the Race for the Cure. I imagine it must be, well, nice, for a lack of a better word, to know that so many people are working to cure your disease and admire your courage in fighting it. It must be breathtaking to participate in the Race for the Cure as a breast cancer survivor. To stake your claim as a warrior against a terrible disease—and have your whole tribe out cheering you on—must spur you on to keep fighting, to make it to the next race the next year. Those of us with sarcoidosis—or lupus or rheumatoid arthritis or multiple sclerosis—don’t have this.

Let me be clear. I’m not for a second suggesting that we take research dollars or community support away from breast cancer to give them to sarcoidosis. No way. At a practical level, I’m probably going to need all those resources someday because my cocktail of immunosuppressants makes it exponentially more likely I’ll get breast cancer in the not-too-distant future. But beyond that—way, way, way beyond that—is my belief that we all have a moral obligation to fund research and care for all diseases. As a nation, we don’t feel very rich right now as Congress and the President squabble over the debt ceiling. But I don’t for one instant think we couldn’t or shouldn’t scrounge up funds for more cancer research—and toss in some money for sarcoidosis and other “weird diseases.” If we can afford to bail out Wall Street bankers and gigantic insurance companies, we can fund a lab here or a disease-awareness campaign there, and some clinical trials everywhere.

It’s logical that diseases that threaten more people will get more attention. I understand that. However, understanding it doesn’t make it less lonely. I get drug infusions (the lymphoma ones) twice a month at the Cancer Treatment Center at the local hospital. There are always fliers posted in the waiting room for support groups for cancer patients, or support groups for family members of cancer patients. Lately, there are fliers offering free yoga classes at our town’s new gym for cancer patients or cancer survivors. I’ve been wondering if I could show up and explain that while I don’t have cancer, I’m still pretty sick and I’d love to learn yoga too. Would I be crashing the cancer party? Or would they let me sneak in?

I understand why Helena’s only hospital doesn’t have a support group for sarcoidosis. It’s not like they’re trying to exclude the auto-immune set. There are lots more cancer patients than sarcoidosis patients. But that doesn’t stop me from craving support. My family and friends have learned along with me how to live with sarcoidosis. We’ve figured out through trial and error how to stay alive in Chronic Town. As hard as they try to be with me in sickness, though, they’re still not sick. While they can sympathize and empathize with me, they simply can’t get it in the same visceral way. That’s why I launched this blog. I wanted to connect with my neighbors on our dimly lit Sarcoidosis Street in Chronic Town. I wanted to offer support and derive support.

As much as I value this on-line community, it’s still a special kick to meet someone with sarcoidosis in the flesh. This happened a few weeks ago at a good friend’s wedding. One of the other guests was D., a woman with cardiac sarcoidosis. She’d read my blog and we had exchanged e-mails before. But actually laying eyes on her and talking about our shared experiences for a few minutes provided a sense of connection that was different. We swapped stories and pulled our collars aside to show each other our scars from our implanted cardiac devices (a pacemaker for her, a defibrillator for me). I walked away from the reception feeling buoyed. D.’s fought this disease longer than I have. She’s kept working in spite of a nasty case of it. She was funny, smart, active, and tough.

The best part of meeting was D. was getting to laugh about sarcoidosis and the craziness it brings. On my own, I do all too well feeling sad, overwhelmed, persecuted, lonely, lost, exhausted, and pitiful about being sick. Just a few minutes of laughter carried me for days. It’s hard to laugh on your own.

When it’s just me and my disease, it’s easy for me to lose all perspective. I forget that I exist in a context, especially when I’m going through a tougher patch like last night when the pain felt unmanageable. I need help to remember that there are better days ahead, that this too shall pass, that it can always be worse, and I’m not alone.

We don’t fight wars or fight diseases—or solve murders—on our own. Even Temperance Brennan needs help solving her murders. She’s got a sexy Montreal cop on her side that shows up at just the right moment to bail her out of a crisis. We survive by knowing that someone’s got our back.

12 Comments

  1. Deborah McGrath said,

    Rebecca–I’m glad too to have met someone in the flesh that has the weird, vicious sarcoidosis–and am glad you saw me as active, tough, smart. I’ve had people want to label me as Miss “In-Denial”–but I tend to think of it as trying to put one foot in front of the other–and so if it is the denial word–so what?! It’s my head–and I’m really the only one who has to live in it! But I sometimes take the path to the deepest depths and let the sadness and grief rise to the surface (with help–because I tend to live in my head more than in my feeling/emotional world–and don’t do it so easily on my own…)–and when I do so, it is amazingly freeing to acknowledge the sadness, anger, frustration! This weird disease affects physically AND emotionally AND spiritually–and more power to you for writing your emotionaL, physical, spiritual journey to process what you do and have been through! Hang tough!! D. (Deb McGrath)

    • Rebecca Stanfel said,

      Hi Deb,

      Thanks for reading and taking the time to comment. It is especially validating to know that my writing resonates with other folks who are grappling with sarcoidosis and other chronic diseases.

      I think a lot about the balance between “denial” and “awareness.” I’m using quotes because they are short-hand for much more complicated concepts. Denial is much more than shoving down feelings and pretending life is different than it really is (though I’ve done plenty of feeling shoving and living in la-la land). At its best, denial keeps us putting one foot in front of the other, as you put it. We need this. If we “process” every drama that comes with chronic illness, we’d never be able to get out of bed in the morning. All of us–including those if us who are sick–need to sometimes rely on habits, patterns, and routines to be functional. I do it too well sometimes, though. Jay used to tease me that I was Cleopatra, queen of de-nile. If I don’t somehow find the space to feel the pain and the joy, all the bad crap starts leaking out in places it shouldn’t–in my relationship with Jay, in my patience with Andrew, in how much wine I want with dinner, in whether I’m craving sugar late at night. For me this blog and the writing I do for it are my ways of “getting real” with what’s going on. I don’t emote nearly as much in my real life as I do in my essays here.

      But it’s always a work in progress for me, and I’m always needing to make adjustments to the denial/awareness ratio.

      I did so enjoy meeting a survivor like you. We should try to get together again. Maybe on a future trip to the Billings area to see my parents?

      In the meantime, take care and be well.

      Best,
      Rebecca

  2. Nan said,

    You did it again! Put it into the best of words – bravo! Thanks – nan

    • Rebecca Stanfel said,

      You’re so nice Nan. I’m glad my writing rang true for you. Thanks for taking the time to read and to comment. I really appreciate your feedback.

      Take care,
      Rebecca

  3. John said,

    Hi.

    My name is John, I was diagnosed with sarcoidosis in 1999. I just wanted you to know that you aren’t alone in feeling alone. I have felt that way ever since I was diagnosed and that feeling is reinforced every time I have to explain to my wife or kids why I am out of breath or too tired to do something. It’s not just an excuse to get out of yard work or taking a long walk or going out Friday night. They just don’t get it.

    Thanks for putting into words what (i am sure) a lot of us feel.

    John

    • Rebecca Stanfel said,

      Hi John,

      Thanks for reading and for commenting! It’s nice to feel a little less alone, so I really appreciate your perspective. It’s damn hard to have to tell our loved ones we feel too crappy to show up for life some days. My husband at least is getting used to me falling apart occasionally. It’s sad, but he’s learning that we’ve got to keep our plans flexible because I might need to bail at the last moment on a dinner reservation, a weekend get-away, or even movie night in the living room. It’s harder with my seven-year old son Andrew. He gives me this look (of anger, disappointment, sadness, betrayal) when I need to miss something. No matter how “minor” if feels to me (like not being able to put him to bed every-other night), having his Mom get sick AGAIN is never minor for him. It doesn’t help that I am by nature a people pleaser and hate letting anyone down, much less the two most important people in my life. I tell myself that deep down, both my husband and my son know that I’m doing my best and they love me as I am. But I’m too good at feeling guilty. I’m the one that needs to learn how to accept myself with limitations. I’ll get there.

      I’m glad my writing resonated with you. It’s so great to hear from new readers.

      You hang in there,
      Rebecca

  4. Paul said,

    Rebecca

    Another excellent piece. I’m sure 5 years ago it was 5% who didn’t spontaneously combust oops sorry remit – Is it my memory or the disease getting worse or are the docs changing there numbers?

    Perhaps we could have ‘International Lie in Bed for Weird Diseases Day’ or perhaps “wear a crazy hat for weird diseases’?

    Paul

    • Rebecca Stanfel said,

      Thanks Paul. I’m so glad you’re still reading my scribblings. I might be wrong about the percentage who spontaneously remits (or combusts). I looked on-line for the numbers I used in this piece and I think they were from a reputable source, but who really knows? I don’t remember it ever being as low as 5 percent, but, as Jay can testify, I’m scatterbrained as hell. I’ll do some digging in the next few days and try to get back to you with a better answer.

      In the meantime, I’ll be working on just the right hat…:-)

      Be as well as possible,
      Rebecca

  5. GoodDays said,

    Hi Rebecca,

    I work with Good Days from Chronic Disease Fund, and it is our goal to assist chronic disease sufferers in gaining the treatment they need. http://www.gooddaysfromcdf.org/

    • Rebecca Stanfel said,

      Hi Chronic Town Readers,

      I allowed this comment to get through my spam guard. I took a cursory look and this organization seems like a good one (and not just the advertising arm of a pharmaceutical company), but I haven’t explored it in depth. Just thought I’d be cautious and clear that I’m not endorsing this site but am letting it post here in case it can be useful to anyone.

      Thanks,
      Rebecca

  6. Deborah McGrath said,

    Rebecca, any time you’re traveling this way, get in contact; coffee, lunch, beers, WHATEVER–could happen! I had a very wonderful counselor lady-friend who helped me w/ the concept of releasing the GOOP literally in my heart (anger, fear, sadness, lonliness) and helped me to understand the link between physical healing and spiritual/emotional healing…BELIEVE ME, it’s only a work in progress for me…Pre-sarcoid, I tended to pooh-pooh new-age-y ANYTHING, and living in my head certainly helped me to stay firmly in that camp! But aging in general, confronting the certain mortality we all face, and having a CHRONIC SITUATION (should I say experiencing chronic sarcoid experiences) have realigned me, allowed me to sometimes to gather my courage and travel to the foreign terrain of emotion and spirit–and I find myself wanting to hang out there a bit more and more… Take care! Deb M.

  7. sarad2 said,

    Reblogged this on sarad2's Blog.

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