Part Two: Being a sick person in a world of relatively healthy ones.
When strange health issues started showing up in my life in my late thirties, it was random and occasional and I just kept going, with the naive assumption that it would get better with time. It started out with an occasional migraine in my middle thirties, but I attributed that to the fact that I was consumed with writing novels while managing a household, four children, and some pretty intense church callings. (I had another baby when I was nearly thirty-eight.) My priorities had always been living the gospel of Jesus Christ in the best way I knew how, caring for my family, and writing—because I knew it was a gift inside of me that I needed to honor. (I need to talk about that at another time; if time passes and I don’t, then someone should comment or email and remind me.) Looking back, I think I believed—as most people do when their body is exhibiting signs of protest—that it was nothing serious, and nothing to worry about. With all I had on all the plates I was juggling, who had time to worry about health?
Little known fact: I love to dance. I realize this was not a good transition from the last paragraph to this one. (I write with a little tiny editor on my shoulder, but I try to ignore that voice for the most part while blog writing.) When my oldest son was a baby and I lived in a small town where no dance studio existed at all, I decided to give teaching dance a try. I’d always wanted to do it. What I learned in the long run was that I love to dance; I didn’t necessarily love teaching or running a business. I only did it for a couple of years, but I continued to use dance as my private means of exercising. The aerobic dance craze was right up my alley and I could turn on music and give myself a great workout. I went through phases of doing it with a friend. The point I’m trying to get at is that in spite of my occasional migraine, I felt like I was in pretty good health. Little did I know that disease was brewing inside of me and had been for a long time. The migraines were my body’s first cry for help, and twenty years later, those cries are still loud and strong. My health journey has been long and complicated and there has been much progress made, but undoing years of undetected problems is no small thing and it doesn’t happen quickly or easily. The migraines seem to be my body’s way of saying, “I’m sick.” My doctor believes—and I agree with him—that when I get healthier, the migraines will calm down. But in the meantime, they are an ongoing plague with a lack of predictability or apparent triggers. They just happen. And sometimes they happen for weeks—or literally months—at a time. I’ve had a headache to some degree for many, many years now. Referring to my last entry, if someone asks, “How is your head?” my mind goes through a quick, common assessment. It’s not a matter of whether or not I have a headache; it’s more a matter of how bad does my head hurt on a scale of one to ten. Is it JUST an Excedrin headache, or does it require prescription medication? Is it head pain through which I can keep functioning, or will it confine me to bed?
But headaches are a symptom, a tip of the iceberg, and it took me years to figure that out. For YEARS I thought I was trying to fix my headaches, now I know it’s just an insidious, cruel, debilitating symptom of much deeper, bigger problems.
If this tell-all experience of blogging is going to accomplish what I’m hoping for, I must eventually go into the actual details of my health issues—which could be boring and will require a great deal of explanation. But before I do that, I want to point out the emotional impact of not having good health while the world keeps moving around you with mostly healthy people. Now, if I walk down the halls of a hospital or a care center, the percentage of people with poor health rises dramatically. But I’m talking about the people who live in my neighborhood and my ward, the people I associate with in the publishing industry, the people I encounter in business or social situations. I’m not simple-minded enough to think that people have struggles they don’t show outwardly in those situations. But I still see and feel the distinct differences.
For instance, going to church every Sunday has always been a part of my life, and it sincerely means something to me. But I’ve only been to church a handful of times in three years. Three years! I try to find ways of compensating at home with certain uplifting television programs, or reading spiritual text. But “brain fog” is a symptom of more than one of my health conditions, therefore, being able to focus enough to read something deep enough to inspire me often just leaves me frustrated, and what’s available to watch on TV or online quickly loses its charm. I’ve either seen it before or it’s the same concepts over and over. I do a lot of praying and meditating, which you might think isn’t terribly difficult when you hardly ever get out of bed. But pain can be a huge block to mentally and emotionally connecting with God and your inner self. This has been one of my greatest personal battles. (I hear another potential blog post in that statement.)
Anyway, the fact that I’m a religious (and spiritual) person and I’m in too much pain to go to church is just one indicator of how my life differs from the majority of people who live around me. I’ve seen people (including my own husband) go through cancer. I went through it too. Typically there is the horrible shock, sometimes surgery, sometimes radiation and/or chemo. I’ve seen people fall apart physically and emotionally. They lose control of their otherwise controlled and orderly lives. They grieve, they’re scared, they’re sad—and so are their loved ones. And then it’s over. Sometimes, of course, cancer kills people. Forgive me for sounding insensitive, but that still means it’s over. The suffering ends. Loved ones grieve and try to move on. The sick person is free from their pain and illness and in a better place. More often than not these days, cancer patients get better; it takes time and they’re never quite the same, but they get better. Life goes on. They start gradually putting their lives back in order. They garden, they shop, they organize their homes, they go back to work and hobbies. But me? It goes on, year after year after year. I am unable to exert even a little physical energy without paying for it later. The last time I went to Costco just to get toilet paper and two other things, every muscle in my body hurt by the time I got home, and they kept hurting for a couple of days. Equation: exertion equals suffering. I don’t go to Costco anymore. Thankfully there are people in my life who help with the things I can’t do. I’m so grateful for them! Otherwise I’d starve. And be without toilet paper.
Of course, I can look around and see other people with diseases and illnesses and disabilities. I’m not so self-absorbed that I believe I’m the only one struggling in this world, and many people have it far worse than I do. My heart goes out to them. I have a friend with Parkinson’s and I’ve seen his life impacted so greatly. I grieve for him, although his faith is strong and he inspires me. I know a number of people with M.S. They too inspire me. I could keep listing ailments. But I just have to say these things because this is MY blog and I’m venting here. Celiac Disease is not that well known, and therefore when I offer the blanket statement, “I’m struggling with the long-term complications of Celiac Disease,” most people do not have a clue what I’m talking about. Hence that feeling—again—of needing to offer a lengthy and boring explanation. Or I just feel crazy. When diseases are common or have a label that people generally understand, they kick into immediate compassion. They already have some degree of knowledge—even if they can’t begin to fully grasp the impact. But with CD, it’s still in discovery stages (which I will explain another time) and therefore I even have to educate many medical care professionals about it.
Emergency Room . . .
Nurse: Do you have any allergies?
Me: I can’t have gluten in any medication prescribed to me.
Me: I have Celiac Disease.
Nurse: Oh, gluten in medications won’t be a problem with that.
Me: Gluten in medications can make me very ill. (Silently: I’m glad you’re well-trained on a variety of problems you might face in an ER, but I know a heckuva lot more about Celiac Disease than you do—obviously!)
Nurse: Hmmm (and on to the next question with a facial expression and tone of voice that implies I’m being ridiculous)
And after waiting an hour . . . .
Doctor: Do you have any existing medical conditions?
Me: I have Celiac Disease.
Doctor: That’s just an allergy.
Me: (trying to sound respectful) Actually, it’s an autoimmune disease that’s very serious.
Doctor: Hmmm (and on to the next question with a facial expression and tone of voice that implies I’m being ridiculous)
So . . . point being . . . after years of just trying to get medical professionals to take me seriously and find out what was wrong, I’m still trying to get medical professionals to take me seriously.
But even among the general population, people have a difficult time grasping what’s wrong with me and why. I’ve had friends disappear from my life for the reason (I have to assume; they never told me) that my health problems make them uncomfortable and it’s too much to deal with. I’ve had people ask me how I’m doing, and after I say something like, “Oh, my health is challenging, but I’m pressing forward,” they’ll say something like, “Yeah, the aches and pains of getting older are awful, aren’t they?” And I want to scream: “This isn’t that! You have no idea.” But I just change the subject. This is not a person I want to discuss health issues with.
Ironically, when I had surgeries, and/or when I had breast cancer, people were more open with their kindness toward me, more willing to help. Less awkward. But what’s going on now—and has gone on for years—just seems to make most people uncomfortable. It’s like Anita’s Health is on some unspoken list with Sewer Systems, Third-world Poverty, and Where Babies Come From.
HOWEVER, there are exceptions to every rule. There are people in my life who REALLY hear me, offer compassion, and help me get through. There are people who ask me how I’m doing and they REALLY want to know; they make that evident by the kindness in their eyes and the followup questions that are asked with sincerity. I know people are busy and they have their own challenges, many that aren’t visible, and I have compassion for that. Looking at the silver linings, I’ve gained a great deal of compassion and empathy through these experiences, and I certainly do not want to be a hypocrite over this or any other matter. I try to remember to reach out more to others, and to do so with sincerity and genuine concern. Human life is a tough gig. My journey is my own, and not to be compared to anyone else’s, because each is unique. If I had any advice to offer, don’t offer advice. (If one more person greets me and then tells me about a new remedy they heard about I could really, truly scream.) Just listen. Really listen. And express how much you care. Some of my most healing moments with a friend have been with the words, “I’m so sorry you have to go through this, and I wish I could fix it, but I’m here for you.” Some tears and a hug usually follow. That’s the best medicine.