When most people hear my story and diagnosis they can’t help but feel sorry for me. They wish they could help or take my pain away. Some even make it their mission to cure me.
This is when I begin to feel like I’m less of a person and more like a “lab rat.”
I’ve categorized these individuals into two groups. The first group is people who take the time to read and study the remedies or recommendations they make. The second group consists of people who will see an ad or commercial for a “cure” and want me to try it without getting all the facts or bothering to find out if there are any success stories.
Both groups mean well and I know these individuals care about me, but often times their ignorance and lack of interest in the facts comes off as insensitive.
I’ve been dealing with auto immune diseases for the past 5 years (lupus, rheumatoid arthritis, fibromyalgia, Sjogrens, and vasculitis). I’ve educated myself about my diet, medications, treatments and the diseases themselves. So, when someone comes along and suggests that I start taking a new medication or remedy who hasn’t done it themselves, I take it as an insult.
If you wouldn’t take something without becoming informed and thoroughly investigating the pros and cons, why would you suggest I do so?
At times I feel like people don’t see me as a person anymore. They just see a problem that needs to be fixed and they’re willing to try any and all possible solutions until they get it right. My first doctor was like that. He would always say he was going to change my medication until he got it right. That kind of thought process was what landed me in the hospital for the first time due to the side effects of my medication.
I currently take several medications, vitamins and supplements. I have a very effective doctor who knows what he’s doing and I trust him to handle my pain and health. I am always open to holistic recommendations, but I won’t always take the things others recommend because I want to be able to speak to the doctor before trying something new. To some this may seem rude or unappreciative, but I can’t put any and every form of medicine into my body just because a friend recommends it.
We’re not just patients, we’re people too. Some people will suggest that I just take painkillers around the clock, but I don’t want to numb my pain, I want to fix the underlying problem.
For some of us, our pain will never see an end, and we need others to understand that we don’t like complaining about it all the time.
I simply wish people would stop trying to fix me and act like I know nothing about my disease. I’m pretty sure if there was a cure for what I have, I would have heard of it by now or it would have made breaking news.
I just want to go back to feeling like an individual instead of a science project.
Arlene Grau lives in Lakewood, California with her family. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.