My Mantra Is Eat, Pray, and Medicate
I am a vegetarian who occasionally slips up and eats a piece of chicken. I became a vegetarian because it made me feel better and gave me more energy. Also, I began to research the foods I was putting in my mouth and, quite frankly, I started to become paranoid. So much of what we eat in the United States is mistreated, dirty, genetically modified, and filled with chemicals that I just no longer wanted to fill my body with since I received my lupus diagnosis.
Changing my eating habits was a personal decision based on how I felt after being a surf-and-turf girl. My symptoms seemed to get progressively worse. At one point, I could not walk and talk at the same time. Getting across a room was difficult and would wear me out so badly that the thought of trying to stand to cook was not even an option. I started eating raw, and I noticed a positive difference in how I felt and was gradually able to regain some energy.
When I started sharing what I was feeling, I got a lot of messages in my inbox telling me to exercise, take this or that as a supplement, and eat organic. Recently, I asked in a support group, “What has been the craziest piece of advice you have received since being diagnosed?” Surprisingly, much of the advice centered around eating, exercise, and medication. An overwhelming number of people were told to come off the “poisonous” meds, eat organic, meditate or pray, and exercise.
I had to laugh because that is the worst advice ever! I told someone, “I eat organic … right after I take my meds.” For those of you who are not battling this disease but are here to learn more about it: Offering this advice is foolish, and it’s victim blaming. We did not do something wrong (lack of exercise, not eating properly, etc.) to get this diagnosis. Lupus claims lives, so to advise someone not to take the medication is like telling a person who was just hit by a car to bypass going to the hospital to have their broken bodies patched up. “I mean, come on, it’s their fault that they were run over while crossing at the light while that other person was texting and ran the light, right?”
I once shared my foolish decision to stop taking my meds cold turkey. As I concluded in that column, I do not recommend doing the same. I learned that I can eat well and I can meditate, but I still must medicate. I share my personal decision to become a vegetarian, and while I feel better than I have in a very long time, I also know that not taking my medication makes all of that “feel-good” go away. Eating organic is good for your body, meditating or praying is good for your mind, but taking your meds is good for your health when you are battling lupus.
So, if you are offering advice to someone, please remember that we are not at fault for our disease. It is incurable, and no amount of eating or meditation will change that. Remission is not a cure, so even those who say they are cured are more than likely in remission, and triggers might cause future flares. And that, again, would not be their fault. It’s just the nature of what we are battling. Please be responsible with your advice. If you are not battling or medically trained, you are speaking from a place of inexperience and should probably offer sympathy rather than advice instead.
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
Colleen G Souders
Amen to the last sentence.
I like how you said "I take my meds then I eat organic". Me too plus I take my hemp CBD oil. It works for me. No legal medical marijuana in KS yet.
Kellie McRae
Anything marijuana, even the oils are illegal here in Thailand, back in Florida you could smoke but if you got caught, it was just a ticket so taking that chance was a no brainer. I am glad you can at least do the oil, the risk of that ticket worked wonders for both my pain an my appetite.
Jill Blackstone
I was a vegetarian for 27 years until I was so anemic that I required an all-day IV infusion while trying to get a diagnosis. When I got to the right doctor who told me it was lupus, he looked at my bloodwork and told me that my vegetarian days were over, that it was impossible for me to maintain healthy levels of iron without animal protein. So I went off to the butcher manager at Whole Foods and asked tons of questions. I called ranchers directly and asked about how and where the animals live, what they eat, and how they are slaughtered. I found the ranchers I wanted to deal with and ate those items. When I don't know the source, I don't eat it.
With all that said, the lesson I learned is -- just like no two cases of lupus are alike, no one umbrella solution works for everyone. There are many people who give up meat when diagnosed. And it works for them. For me, no. I also hear a lot of "no dairy." I feel great on dairy, full fat baby. I feel awful when I don't consume dairy. I am careful. I buy grass-fed humanely raised dairy that is locally sourced.
But oh yes how many times have I heard -- if you do this or that, you can get off medication... my friend had lupus and she started drinking algae and doesn't need medication... I know a reiki practitioner who will get you off of medication... that medication is poison... big pharm is ruining the world, boycott medication...
Meanwhile, while the flu is running rampant, I have had more knuckleheads tell me to take echinacea than I can count. Echinacea can have a fatal interaction with a medication I take. My well-meaning mother urged me to get the shingles vaccine, not knowing the difference between killed or live vaccine (the latter which could kill me).
Some people mean well. Some are just know it all judgmental types. Either way, do what works for you.
Kellie McRae
I love that you are so aware of what you are putting in your body. I am a sorta vegetarian lol, if my body says have some chicken, then I have it. Fortunately, I live in a place where I can see that little guy running around and then in 10 minutes, he's not. I have to eat a bit more than the norm of what I would eat back in the states on the few occasions that I do indulge, the chickens here in Thailand are boney and that makes me happy because it means they are not hopped up on steroids. Bigger picture of what you shared is like you said, what works for you may not work for me. So many people are of the mindset of one size fits all medical care. What an awesome life we would be leading if that were the case, we could follow to the letter what that 1st person that went into remission did. When I initially got diagnosed, I would say well people mean well, now they just drive me up the wall talking about things that they have no real foundation in. Every battle is so different and even to another lupus warrior, I personally would not tell them what I think they should do. I know what works for me and only me, I respect your battle and I am actually a bit jealous...I miss steak lol A little Worcestershire sauce...ok, lets not talk about it lol but you are right, do what works for you. Thanks for sharing