To the People Who Suggest I Make Lifestyle Changes to 'Cure' My Lupus

Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before going on or off medication.

Have you ever been approached by someone who knows you have an autoimmune disease and suggests that perhaps if you eat healthier, diet or try certain supplements you will be cured? I have a bit of an issue with this. I actually find it offensive when people suggest I try “this or that” or when other autoimmunies say they have been “cured” of their disease just by diet and exercise alone without knowing my story. I want to address this from my perspective. I feel this is dangerous and it gives others a sense of false hope or that they are not doing something right. It can also make you feel like you have failed or are not trying hard enough.

I have SLE and CNS lupus along with other autoimmune complications. I struggled for over 20 years before being officially diagnosed. Before my lupus took a major toll on my life, I was very active and at my fittest. I ran every morning, lifted weights, loved hiking and worked a full-time, physically demanding job. I ate healthily, took care of my body and I was in the best shape of my life… and this is when lupus hit me the hardest. What did I do wrong? Nothing.

 

I have been on a diet my entire life, and have done everything “right.” As a matter of fact, I spent most of my teenage years on a farm when my symptoms began. Most of my life I lived overseas and ate nothing but “clean” organic whole farm food because it was our way of life. Instead of taking me to the doctor, my mother would treat me at home holistically. Of course, what you eat can affect or aggregate your disease just like many other diseases. But there comes a point when you may not have total control of your disease, by no fault of your own.

Lupus, like many other autoimmune diseases, will do what it wants when it wants, without warning, regardless if you’re doing everything “right.” Lupus is an autoimmune disease caused by a genetic mutation. There is no known cure. Lupus can go into remission, but I think there is a huge misconception between being “cured” and going into “remission.” The definitions have two entirely different meanings. Lupus can range from mild to severe. Lupus can attack major vital organs which can be life-threatening. Every patient and treatment plan is different. No two lupus patients are alike.

I chose a rheumatologist who treats me both holistically and with modern day medicine. I rejected chemo for nearly six months because I did not want to “poison” my body. By the grace of God and that “poison,” I am still alive today. I literally went from taking no medications to over 20 prescriptions and supplements daily just to maintain my day-to-day life.

What may work for some may not work for others. For some, maybe all the person needed was a lifestyle change and their disease went into remission, and that is wonderful. Unfortunately, this is not the case for most of us. Before you make suggestions to an autoimmunie about their lifestyle without knowing their story, please take into consideration how you could impact that person’s life with your words. Having an autoimmune disease is serious and is not to be taken lightly.

I know at one point, being frustrated with myself, I listened to all the bad advice and regretfully got off all my medications. I learned very quickly what a dangerously huge mistake that was. My doctor told me I had two options: I could either take my medications, or allow my disease to progress into my organs. Which at that point, it already had.

So yes, exercise, do what you’re able to do, stay away from trigger foods and take care of your body, but also find yourself a good doctor and find a treatment plan that works for you. No one knows your body better than yourself. Don’t let anyone tell you otherwise and maybe someday, hopefully, we will find a real cure.

Thinkstock photo via lorenzoantonucci.