sinisterporpoise

Such advice often extends to dietary issues. People often latch on to the latest fad because they think it will improve their health.  Gluten-free mania and the paleo diet are the best examples of this at the moment.  Despite what some alternative health practitioners believe, removing gluten from the diet does not benefit fibromyalgia patients unless they also have celiac disease.  This is also true for almost all autoimmune diseases, with one obvious exception. (I know there are a few other conditions that may require a person to cut out gluten, but I do not know what they are off-hand.)  Until leaky gut has more scientific evidence behind it, should such a thing ever occur, I will remain skeptical.  Believers put forth plausible-sounding theories, but I have not seen any research coming from academic sources that proves the existence of the condition.

People who have fibromyalgia and/or autoimmune conditions – other than celicac disease again – who have tried these methods and found that they work should not give them up.  Such patients may experience the placebo effect or the nocebo effect. They may even have undiagnosed wheat allergies or celiac disease. I will not question their stories about how one of these diets worked for them as long as they do not insist that the same diet will work for me. (I’ve tried it. It didn’t do much. Besides, I had reasons *for* trying a gluten-free diet, reasons which include a doctor who just wrote my symptoms off as fibromyalgia before he ruled other conditions out.)

Politely thanking a concerned party and turning down their suggestion is not a rejection of the person. It only indicates that I have decided not to follow that person’s suggestion. I am likely to dismiss ideas that come across as pseudoscience. If the idea sounds plausible to me, I will ask for more information. Any person who has made it this far should avoid using phrases like “Google It.” The third party brought this information to me. By engaging in a conversation, I have already made the reasonable assumption that  they want me to ask about their proposed solution.

I understand that the people closest to me and compassionate people worry about my health, particularly if they see me on high-pain days. Please make the assumption that I really am doing the best I can with the resources I have available.  Unlike the concerned third party, I have to live in this body every day. This body is better than some and worse than others. Assume that I know what works for me and what does not.  Do this  and  I will do my best to return the favor.

When I first started suffering from intense pain in my right thigh nearly a year ago, I complained vociferously about the pain I felt in my right thigh. It’s understandable. The cramping kept me up at night, and the pain almost brought me to tears.  However, even I got tired of it, and I realized other people probably got tired of me complaining about it. The only lasting effect I’ve had from this is learning a lot more about migraines than I’d care to because my roommate now figures it’s safe to talk about her symptoms when she experiences them. 

Perhaps one of the things that drew me to journalism in the first place is the belief that information should be shared. I want to put helpful information out there so people can use it.  A side effect of this is I often offer up information that people do not need to know or even care about.  (This could indicate that I’m on the Autism spectrum.)   At first, I told everyone how I felt, but eventually I realized that most people do not care.

It does not mean that complete strangers are cruel or heartless. It’s just that they do not know me. They have problems of their own that they do not share with me on a daily basis. A complete stranger has no reason to trust me with this information, and even if they did, there’s often little I can do about it anyway.  Some of the people who I might have told, including co-workers, might not have had my interests at heart. Because my workplace is dominated by women, I know that its interpersonal politics can be quite vicious.   Starting the job while presenting as male shields me from some but not all of this behavior.

I don’t always withhold this information when I should. If I experience a lot of pain, I may let this information slip because my mind is elsewhere at the moment. I’ve also had to answer the questions of persistent people who can see that something is wrong. One customer even handed me a business card and told me he could fix my problem.   (That business card is now hanging on the refrigerator, ostensibly in order to build a ‘quack file’ of people never to contact.)

Now, she suggests just saying that someone is fine as a way of starting new conversations or taking a break. I am not as social as the woman who does the Chronic Babe vlog and Youtube videos, but regardless of why she or I do it, it’s still a good practice not to focus on what is wrong all the time.