Wednesday, January 29, 2014

Things You Should Never Say To A Behcet's Patient...

So I had quite an experience about a week ago. Let me tell you what fun I had...

My friend and I went to get something from someone off Craigslist. She's driving because I really don't drive much anymore due to fatigue (plus I really don't want to get murdered alone if that was to happen- crazy ass people out there). I mention this because it plays into my story. We get to this lady's house, gorgeous neighborhood and house, go inside to purchase our items. The lady says to my friend "It sure is nice of you to drive her". I make a comment about how I don't drive much due to my autoimmune disease on the phone so she knew I was bringing someone along. The lady then goes on a spiel, and I mean spiel about how I  would get better if I eat right and think positive because it's all in my head. Yes, she actually said this to me! And she was serious! She doesn't know me or even what my disease is, yet she has become an expert in Behcet's Disease. Let me give you an idea about how crazy this lady was- she began telling us about how she goes to a veterinarian for her health problems because he has helped her better than anyone else has. Personally I think maybe she is taking too much horse tranquilizers...We get to the car and my friend says I was waiting for you to clock her one. Did I do it? Nope. Did I think about it? Yep. Am I a violent person? Nope, but occasionally I envision bitch slapping people like this and some people in general but that's another story.

So with this story being told, I actually started this post way too long ago, like June of 2013. Oops, a little behind!  I hope you enjoy it and learn from it.

There are some things you should never say to a person with Behcet's Disease. Actually to anyone with an autoimmune disease for that matter. Are you aware of what they are? I'm guessing not, so let me educate you. And for those of you smart enough to keep your mouth shut, good job :)

First and foremost, never, ever, EVER say "You don't look sick." Every day we are suffering, the problem is you do not see us suffering as you cannot see/feel what's happening inside our bodies. I can try to explain it as I have before but nothing I say will do it justice for what it is truly like living with this disease. Something that also goes with this is "You look good." I realize most people think they are being nice by saying this, however, once again, you cannot understand what is going on inside of us. Just because I throw on a little make up, tie my hair back, etc. does NOT mean I feel good. It means I was lucky enough to be able to get out of bed today. If you ever have a doctor tell you something along the lines of "you don't look sick"- RUN! and run fast!

Another one of my favorites is "If you eat right, take vitamins, and exercise, it will get better or go away." Hmmm, let's think about this. So my body is going to magically quit attacking itself? My blood vessels are going to start behaving themselves? Well damn, maybe I should've just put them in the corner for a time out. Um, yea, do you realize how stupid this sounds? If you really knew how this disease worked, you would know that exercise or an activity, even something like walking up the stairs, a doctor appointment, or swimming, can throw our bodies into a flare up. Not every time, but 95% or so of the time (based on my experiences). Of course, every person with BD is at a different stage in the disease and if affects everyone differently. Why? Because Behcet's is just that special...Now I do think there is something to eating healthy, very specifically gluten free. I've had numerous people tell me they have gotten some relief, not a lot, but some from being gluten free. It's worth a try, right? I remember something someone close to me said when I first got sick- "If you go to the gym you'll feel better because that's what happened to me" (this person did not have Behcet's but because they felt better after going to the gym this would magically cure me of course). This was very hurtful because it told me they really have no clue what's going on with me. Then it was the uphill battle to get them to understand why it doesn't work this way. It's the worst when it comes from those closest to us. I actually know people who have lost a lot of weight since getting sick because their doctor's thought it would help. Did it? Nope, in fact these people told me they actually got worse. Once again, everyone is different with how it affects us. Some treatments work for others while it may not work for you. I personally prefer alternative treatments to modern medicine- acupuncture, biofeedback, herbs, etc. as they have helped me more than modern medicine.


If you feel the need to comment or say something, ask how we are doing, but be prepared for honesty. Sometimes we might decide to say good, or fine, just to not talk about it. Chances are the person you are talking to is suffering but doesn't want to burden you with their feelings. Better yet, just give us a hug. But not too tight as it hurts more than you think. Imagine hugging someone with broken ribs- you're not gonna bear hug them, right? :)


Of course I've missed some, probably many, but will add as I remember. I'd like to thank my new Behcet's friends for getting my arse moving again on the blog. If they didn't come around, it'd probably be another year before I write! ha ha :)

I remember the days before getting sick when I was on top of everything (perhaps another blog post coming on that thought)...

 “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." ~ Leo F. Buscaglia

And because I'm feeling a bit snarky, here's one of my favs of the day: