Oils are no Substitute for Actual Medicine

Sorry for not making a post yesterday. It was my mom's birthday and I never really got the chance to sit down and write so I will post the two memes that I ended up posting yesterday and the meme that is for today!

He was so cute I had to post two of him!

Okay, now for today's post I wanted to talk a little bit about something that actually happened to a friend of mine that has vasculitis that attacked her kidneys resulting in her needing a new one. She started a facebook page to help her achieve this goal and is using it to document her journey through dialysis and on.

Naturally, a public facebook page is going to get all sorts of people that comment on it, but one person left me floored by their response to one of her posts. They actually told her that they had some oils that would take care of her. Now, I don't know if they were just saying that the oils might help alleviate some pain or if they were actually telling her that instead of a new kidney she should just take some Frankincense.

The sad thing is, while a healthy person might that a suggestion that an oil would work as a cure for us is so silly that no one would do it, but you would be wrong about that. I know many people with chronic illnesses post about their experiences, I know I have posted about my experiences with having people tell me about the so called "miracle cures" they know of. These suggestions are so common there's a square for it on the chronic illness BINGO card.

While I understand that the people that make such suggestions are coming from a place of love and aren't trying to be terrible, the truth of the matter is, they are. When you suggest alternative treatments to a person when they aren't asking for or about them you are derailing what the person is saying about their medical treatment.

When people give me these suggestions I tend to hear one of two things. This,
                        "I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you and a doctor because I scraped my knee once and this stuff worked on it so it can obviously work for everything else out there 100% of the time."

or

                         "I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you or a doctor because I believe in all sorts of conspiracy theories including the idea that medical science is actually a business and they want you to have to keep paying them for services. BIGPHARMABIGPHARMABIGPHARMA!"

But at least the first one is coming from a place of love: it worked for them, or at least they thought it worked for them, so it will work for you too. I'm not sure where the other one is coming from, maybe love that took a detour on the fear bus into conspiracy theory town.

The problem is, these statements do harm. They work to try and convince people that they don't have to listen to their doctors. If you have any sort of chronic illness it can become tiresome to take all the medications and do what you need to do to stay healthy; so depending on when someone makes these sorts of suggestions to you it can be really tempting to try it. You are telling us that we should take our hope away from what has been proven to work and place it in an unverified, untested long shot. You are also essentially telling us that we don't know what we're talking about when it comes to our illness and that you, who have no experience with it and more than likely know next to nothing about it, know better than we do. Seriously. Just stop making these suggestions unless you have specifically been asked about some supplement!

The incidence with my friend, though, that lead to the creation of today's Vasculitis Awareness Meme!

Health Fads

I don't know if it's the same where you are living, but in my area there is this big health fad right now that's called "Thrive". It's a supplement system that is along the lines of Herba Life and what not. Most of my friends are doing it right now and are raving about how much it has done for their health and energy and yadda yadda yadda.

This meant that when I went to a friend's house recently for a girl's night I got the whole sales pitch and it was so unexpected that I didn't even get to bring out a Chronic Illness Bingo Card!

By Carolyn Thomas @ HeartSisters

This situation would have been a mark on the "My friend was cured by-" "Have you tried....?" and the "You should try this diet" spaces.

I was told to check out the website and see all the people that have Lupus that are using this and how they are doing so much better now, etc, etc.

Well, that may be, but the problem is that out of the first three ingredients two of them make claims to boost the immune system. Further down there were more immune boosting supplements in the ingredients.

Now, for those that haven't been keeping track: Autoimmune disorder = Immune System Too Over Active So It Tries To Take Out Everything. This is why those of us with autoimmune disorders take immunosuppressants. The goal of treatment is to make the immune system not be some overactive mess and boosting the immune system would work counter to those goals.

My rheumatologist, and other rheumatologists, have all said that unless you have an active infection I and other people like me should not be taking anything that will boost our immune systems. This makes sense to me as a more active immune system increases the likelihood of flaring which is also the same principle behind us flaring when we get sick.

For my friends that are "Thrivinig" more power to you, for those Lupus patients that are "Thriving" I hope you've discussed it with your rheumatologists. For me, I will choose to keep on with what I am doing and not increasing my risk of flaring.