Sick (7 page)

I've been chronically ill for at least twelve years, but this last year has been different. Dissatisfied with the useless diagnoses, treatment plans, and prescriptions I'd received from the many doctors I've seen over the years, I decided to take matters into my own hands. And I got better. And better. And then one day I was practically healthy. I was ecstatic, as I finally felt like I was gaining some semblance of control over my life. I wanted so desperately to tell everyone I knew, but quickly realized it wouldn't be so easy. That's because no one really knew that I was sick in the first place.

At first, I just told my closest friends in intimate confidence, and their reactions shocked me. They were completely, unwaveringly supportive, and I learned that many of my friends have similar medical problems, or had been through something similar at some point in their lives… I started telling everyone, and while I can't say their reactions have always been equally affirming, I can say the whole process has been positive and life-changing.

I've realized that talking about sickness is necessary to de-stigmatize illness, communicate limitations, build community between those dealing with chronic illness, learn and disseminate alternative strategies for getting better, and agitate for better health care. It's essential for personal healing and for political change. As a result, this piece is both my personal narrative and a call for my fellow sick folk to come out of the closet.

So where to start? At this point you're probably wondering what's wrong with me. It's a question that sickly people know well. In short, I'm either immunologically fucked or I have too much immunity. I have a whole bunch of auto-immune disorders: asthma, severe seasonal allergies, many food allergies, irritable bowel syndrome, gastro-esophageal reflux disorder (GERD, aka chronic heartburn), eczema, and arthritis. There have been times when I've been on the brink of death, and other (rare) times when I've been “okay” for awhile.

For years I saw a different specialist for each disorder I had. I also had a primary care provider who would document the findings of all of these other doctors, but she could never tell me what it added up to (except for agreeing that I was
immunologically fucked). I rode this medical merry-go-round unquestioningly for eleven years, and was sort of satisfied as long as they kept me stocked on my meds and had some sort of scientific explanation for what was wrong with me.

Then last year I hit rock bottom. All of these problems sort of hit at once, but the thing that was really causing me the most trouble was the irritable bowel syndrome. I'd given up most foods other than milk, bread, tomatoes, and meat, but somehow I was still really sick. I already knew I was allergic to all legumes (no more tofu, tempeh, beans, hummus, or veggie burgers) and a lot of vegetables, so I couldn't really handle another food allergy diagnosis. I felt like if they took anything else away from me, I would crack and stab a specialist in the kidney (being sickly, I know just where the kidneys are located).

In any case, I got to a point where my body was hardly digesting food. Almost every meal passed right through me with little thought on the part of my digestive system. It was like there was a knife in my stomach, a fire in my heart, and I was nauseated about half the time. I was also experiencing more headaches, sinus problems, and asthma attacks. I was always run-down and depressed, which is what happens when you're badly malnourished. I felt like I was never going to get better, and was seriously wondering if I had anything left to live for. Somehow I was working my ass off and getting by professionally. God knows how.

I had totally exhausted my options within traditional Western medicine. Every time I saw a specialist they'd rehash the diagnosis of the specialists before them, and it was starting to feel like a waste of my time. I was having a hard time dealing with any asthma triggers at all (household mold, seasonal allergies, exercise, the common cold), and my visits to my asthma doctor were getting increasingly desperate. “So … if I move to a different kind of house I won't get better… and if I take this medicine I won't get better… and I took that one and I didn't get better… So there's really nothing you can do at all. Nothing that can make me feel alright
ever
…”

The doctor tried to console me by telling me that many people with my disorders live very full lives—with the aid of prescriptions, and by reducing their physical activity, and by not going out too much in the summer (or fall or spring) and by living in the most hypoallergenic accommodations they can find. And, like pulmonary doctors before him, he reminded me that it could be worse. I could have even nastier disorders, or as one specialist once said, “At least it's not lung
cancer.”
You're
probably
not going to die. Just be sure not to run or walk too briskly or get a bad cold or eat some soy by accident or get blown over by a strong wind. Given such demotivational diagnoses and treatment plans, I made an appointment to see an acupuncturist because I figured I had nothing to lose. I couldn't feel much worse, could I?

I had no idea just how much a doctor of traditional Chinese medicine could help, and as cheesy as it sounds, Chinese medicine gave me my life back. I have an awesome acupuncturist at Oriental Health Solutions in Durham, NC, and she has actually treated all of my problems successfully. Chinese medicine is a holistic practice, so they look to how certain meta-imbalances affect multiple systems, and as I'd expected, all of these auto-immune disorders ARE related. They believe that the digestive system supports immunity and the lungs, and my acupuncturist said I had to improve my digestion before I could expect to feel better on the asthma and allergies front. I didn't believe it at first, but I figured anything was worth a try at that point.

She put me on herbs to balance my system and digestive enzymes to make up for my pancreatic deficiencies. And much to my surprise
I started digesting food again.
All of a sudden, within a day or so of taking the supplements I was getting nutrition from the things I ate. It wasn't a complete fix, and I'd learn shortly thereafter that my true and worst allergy was milk, but it was a huge improvement. Soon thereafter I gave up milk, and my asthma, allergies, and digestive problems mostly went away.

That's not to say that I'm totally healthy and immunologically fabulous now. I still have to put a lot of work into staying healthy, and staving off my body's natural imbalances. A cold can still be a lot more dangerous for me, and every now and then when I exercise I get that certain “oh, I can't breathe” feeling. I can still be totaled by some milk powder put in bread at a fast food joint or an organic bakery. I'm on a whole anti-inflammatory diet to overcome all of the damage I did to my body by eating allergens for years, and so I generally don't eat sugar, gluten, or yeast in addition to the legumes and dairy I've already given up. It's made it a lot harder to eat out, but I appreciate that it has forced me to eat local, fresh, healthy, and homemade foods. While it's a lot of work, I'm incredibly grateful for the knowledge and treatment options I have, and it's all the better that it came from outside of the traditional medical and food industries.

Initially, the impetus for coming out as sickly came from the changes in my diet. Many of the people in my life couldn't imagine giving up milk, especially since I'd already given up legumes. Between these two restrictions, I can't eat much of what is considered “food” in America today. It's really an alienating experience to walk through a frozen food section or gas station and realize there's almost nothing I can eat. My friends knew that either something was really wrong, or I was just really fucking weird. As great as it is to be weird, I finally started telling people bits and pieces of the story, and eventually the whole story.
I began telling people about how I had undiagnosed digestive problems for all of high school, how the doctors never helped anyway once I was diagnosed, the process by which sickness derailed my graduate education, and how the times when I wasn't returning calls it was often because I was too sick to get out of bed. And I experienced something I didn't expect. I thought it was just a horrible story like any other horrible story, and that they'd hear it, move on, and forget about it. But people's reactions were bigger than that, and it made me realize that chronic illness was bigger than I allowed it to be. It wasn't just a road trip from hell, or a hangover of legendary proportions, or a boring wedding. It really was different than most people's experience of life. Chronic illness had been one of the defining features of my life for years, and somehow I just never told anyone.

This is not to say that talking about my illnesses is always easy or something I want to do all of the time. The single worst thing for me is dealing with other people's lack of understanding of my health problems. It's not surprising that people don't know more about fairly common disorders, given that most of us get our medical knowledge from grade school biology (this is where babies come from + don't do drugs!), but it can get old to be an educator about your illnesses. While you've heard your story a thousand times, and it may be painful, emotionally wrought, or boring to you, it will always be novel, shocking, or fascinating to others. They may ask painful questions about whether you've tried everything you can, whether you have the right diagnosis, how soon you'll get “better,” when you think you'll be eating your allergenic foods again, and perhaps worst of all if you may have imagined it or be faking. While these questions are incredibly difficult, and can verge on insensitive, I always keep in mind that these people just don't understand the situation. Illness, or your particular illness, may be completely foreign to a lot of people. The only way they can understand is to discuss the medical condition with them, and often the understanding they gain comes in handy if your limitations are an issue in the future.

The other part I find most difficult to navigate are conflicts with my own radical politics and with the political community to which I belong. While I see my illness and treatment as further evidence that this country's medical and food systems are totally out of control, and have used it to inspire my politics, sometimes people who don't know me think that I'm either not very political or less political because of my limitations. I have to explain to people that I'm still “working up” to cycling, as I still have a hard time biking places with my asthma. I've had to break it to people that I can't eat whatever they found in a dumpster, and it's hard to reveal that my messenger bag is full of supplements, digestive enzymes, asthma inhalers, and epi pens. It was particularly difficult for me as an anti-consumerist to rely on mass-produced products to stay healthy, but luckily with
Chinese medicine I have more natural alternatives. It bothers me that I don't have as much time, flexibility, or energy as some activists I know because I'm already so worn out from taking care of myself, and I feel guilty about not being more involved. Also, I often have to justify my “decision” to work an office job in order to afford healthy, hypoallergenic food, take care of myself, and remain insured. In reality, I feel so grateful that I even have the job that I have, as much as I still dream of a society where health care is not unjustly tied to the ability to work. Many people with chronic illnesses do not have this luxury.

I went through a phase of not telling anyone again just because I was sick of retelling the story, dealing with their disbelief, feeling like I was really different, and worrying about conflicts between sickness and politics. I was feeling better and just wanted to put it away for awhile. But it's still a huge part of my life, something that requires accommodation, and a part of my radical politics, so I couldn't keep from talking about it for long.

So here I am now, telling everyone. As mentioned previously, while the process of coming out as sickly has often been difficult and painful, the moments when people finally get it make it worth it. While I still ask for as few accommodations as possible, being that kind of person, it secretly warms my frosty heart whenever someone says “I made these brownies soy, milk, and gluten free for you.” Perhaps more touching are the rare moments where I meet other people that are sickly too, or others with secret food allergies. It is always a moment of triumph, of pleasure in difficulty, when you meet someone who has gone through a similar level of hell. Having the understanding of people who've also worn hospital bracelets is invaluable. It is my hope that by telling my story, and having people tell theirs, we can begin a whole other process of healing. Chronic physical illness has mental, emotional, and social tolls that often take a sideline to whatever is wrong with our tangible bodies, so it's essential to find support, self-respect, and a life worth living, regardless of ability or impairment.