What is a time of joy for many women was my darkest hour.
I have been living with a disease called systemic lupus erythematosus (or commonly known as lupus, or SLE) for the past nine and a half years, although I’m pretty sure it has been even longer than that. You may recognize the name of the disease because of allegations that Selena Gomez suffers from it, or the fact that Lady Gaga has tested positive (without symptoms) for it.
For those of you who aren’t aware of what it is, it is essentially a non-progressive (but potentially fatal) illness in which the body mistakes healthy tissue for a disease, and attacks it. In my case, it usually attacks non-vital organs, but your heart, liver or any other vital organ is vulnerable. It's characterized by periods of disease activity and remission, meaning many people live totally normal lives (although are often in pain on a regular basis) between periods of being really, really sick. Although lupus is different in every case, most people with lupus become ill more often (if the flu comes around, I’m going to get it, and sometimes twice), have joint and muscle pain, suffer from arthritis, get rashes on their body, are tired and fatigued and a host of many other pretty crappy things.
That is the extremely abbreviated explanation. If you’re interested in a much better explanation about it by actual professionals, the Lupus Foundation of America will give you a run down on their FAQ page.
Having a chronic illness, especially one that is “invisible,” often leads to my being under increased scrutiny. I was given the label of Chronic Fatigue Syndrome at first, a condition frequently mocked, due to its name. A roommate I had in college told me that her father was an anaesthesiologist and he didn’t believe the disease was real, therefore I was making it up as an excuse to stay in bed all day. I did manage to graduate from college, and write and direct a play whilst I was “being lazy,” then go on to earn two Masters degrees and am in the process of a PhD…but I digress.
With a label of Chronic Fatigue, there isn’t much for people to give advice about, besides “drink more caffeine” or kindly requesting that I snap out of it. At first, I think, people thought I was depressed because I started to develop very noticeable lupus symptoms after my first boyfriend unexpectedly dumped me.
Coping with your first serious symptoms of a lifelong illness sucks. Doing so while wrapping your head around the fact that your first serious boyfriend no longer loves you and has moved on to someone else within weeks of dumping you is truly awful.
Many people with lupus are diagnosed with several illnesses before their doctor settles on SLE. I had long suspected I had SLE because my late grandfather also had it (which is actually really rare considering as it is mostly a disease of mostly women in their childbearing years). When lupus was finally written on my chart, I felt relief, that people would finally know I wasn’t "faking it." I had a label and everything! The doctor gave me medicine that vastly improved, but didn’t fix, my fatigue. I was prepared to get on with my life.
What I wasn’t prepared for was the fact that now, with a label, would come a host of people who would indirectly tell me it was my fault for having lupus. Many times when I confided in someone about the disease, they would say, “Well, have you tried that new diet that’s come out? My grandmother’s postman’s friend’s son tried it and it cured him of his lupus!”
At first, it was things like gin-soaked raisins, certain magical berries and other things that were supposedly going to alleviate my symptoms. Some things I tried, some things I didn’t. Nothing "cured" me. The thing is, none of the people telling me about these supposed cures seemed to have lupus, and not one was a medical professional.
There was even a rumor going around that Diet Coke causes lupus. Websites like this one make the idea seem legit, but if you dig a little bit, you’ll see that this “doctor” has an affiliate program (where you can make money by selling his own drugs) and a diet pill that claims to help you lose weight overnight. Oh, he also has a “naturopath cure” for lupus and MS you can try. For a fee, of course.
I admit I do drink Diet Coke in excess, and it probably isn’t the best thing for me, so after hearing this rumor I asked my rheumatologist (a specialist for lupus and lupus-like illnesses) about it. At the time I asked her to address the Diet Coke rumor, I was living in New York City and seeing a doctor at the Hospital for Special Surgery and a Harvard Medical School graduate. She was at the top of her game, and I loved her because she really cared about her patients.
As someone who is a leader in her field, she said she had never heard this Diet Coke theory before. It wouldn’t hurt, she told me, to try and cut it out if I wanted, but she doubted it would make a difference. Besides, she reasoned, if Diet Coke consumption was really a factor, then many people she knew should have lupus.
Every so often, that rumor pops up again on Facebook and someone will forward the link to me, insinuating that if I just had the will power to stop drinking the Diet Coke, I would be cured. Currently, I live in the United Kingdom and last summer there was a Coca-Cola campaign where you could find your first name printed on a Diet Coke or Coke bottle. After proudly finding my name (seriously, it took me weeks, and Anna is a pretty common name here in the UK), I proudly posted my find on my Facebook only to have people (who neither had lupus nor a medical degree) say, “You have lupus, you shouldn’t be drinking that stuff.”
Recently, there has been a growing mass of people who believe wheat is the devil, and that you can cure yourself from any and all ailments by following their diet plan. One such group actually ambushed a lupus support group I was a part of when I lived in New York. They were looking to start a retreat for people with lupus, with the goal of weaning them off of their medication, and we were their sales target. One of the “founders” was very frustrated that her sister with lupus wouldn’t try this plant-based diet she had invented and that she knew would cure her.
She also claimed plants could cure cancer, but “Big Pharma” was stopping that from “getting out.” (I could write a whole other article on “Big Pharma,” but I’ll just state for the record that I don’t believe there is a worldwide conspiracy to keep people on unnecessary drugs.)
“Don’t you want to live your life without medication?” the woman asked us, as though the group of us had any choice. I knew for some people in that room, that medication was keeping their hearts or kidneys from being attacked from within.
These two women went on to say that lupus seems like it is a new illness because you “never heard of people being so weak in the old days” and therefore must be attributed to our modern dietary habits. I know this line of reasoning is really popular, but as a historian (I hold an MA in History and am working on a PhD in History), I don’t get this glorification of the past and their diet. Yeah, you kind of don’t hear about weak people all that often because they mostly died. 150 years ago, I would totally be dead with one of the more serious kidney infections I’ve had (if I hadn't already died from the flu or some other childhood illness like scarlet fever or the measles or any other host of diseases that people rarely get due to modern medicine).
So-called “weak” people now have access to modern medicine that allows them to live through childhood diseases, the flu, infections and so forth. Plus, this argument totally ignores historical evidence that there were people who were genuinely sickly, such as Louisa May Alcott. Some modern day medical historians believe she suffered from lupus SLE due to the symptoms described in her diary. Also, lupus was difficult to recognize back in the day without modern blood work (in 2014, it’s still not a cake walk for doctors to diagnose), so it only seems logical that a lot of people had it without every really having a label for it.
Another friend of mine heavily advocated I try the paleo diet because it cured him of his anxiety and acne (which apparently is the same as lupus). He was so adamant about it that he even accused me of wanting to have lupus because I didn’t want to try the diet and he (again without a medical degree or scientific data) knew it would cure me. I did look into the diet and it seemed unsustainable for me, as I’m not a big meat eater. This person then told me I wanted to “quit when things got difficult.”
Therefore, having lupus is pretty much my own fault.
I’m not knocking diets like gluten-free or paleo or whatever. If people actually feel better by following one of these diets, then that is their choice, and I'm really glad they’ve found something that works for them. I've tried some of them as well. I went gluten-free for a month, and ended up feeling more tired than usual (I was told by the paleo/gluten free evangelists that I was doing it wrong, or that it was my body detoxing from all the poison I had poured in it). I tried going vegan, but it seemed very difficult to get a good amount of protein, not to mention it made it nearly impossible to eat out.
The thing is, I’ve never heard of anyone with lupus claiming to have been cured by any of these diets. People will say that certain things help them, but I've never run across anyone going completely medication-free as a result of changing what they eat. Generally, I find that I feel better when I am able to exercise (although it is not always possible due to the way my joints feel), eat healthier (in the traditional sense, not in the crazy diet sense) and get in more protein. I feel stronger with exercise and plenty of fruits and veggies, even if I don’t always stick to it.
But that's my own personal choice. Learning to listen to my body and rest when I need to has also played a huge role in making me a more productive person. If you feel better standing on your head every morning and putting gin soaked raisins in your paleo-friendly bread, then more power to you. It’s a scary thing to admit, but humans can’t always control everything about our own bodies. And we aren’t always masters of our own fates.