My Do's and Don'ts of Fibro Talk

As promised yesterday, in addition to the awesome points Maggie makes in her blog post, "A Guide to Talking About Crohn's," here are some "DO's and DON'Ts" that have personally affected me when talking about Fibromyalgia. Some of these may come out a little...abrupt, if you will. But just stick with me, I promise to explain where I'm coming from.  

Here we go...

DO ask questions. This is important. I am always thrilled when someone wants to learn about Fibromyalgia. There are a lot of unanswered questions as to why people develop Fibro and how it’s developed. Some doctors still don’t even believe it exists (which is ridiculous). HOWEVER, even though many questions about Fibro still cannot be answered with 100% accuracy, there IS a lot of research and facts that can be understood easily. Ask me! I’ll be happy to tell you. 

DON’T ask me if it hurts. Ok so this is one that may sound a little harsh. Stay with me here, I'll explain.  When I’m asked “What happened to your wrist?” or “Did you hurt your back?” because I’m using an ice pack (or whatever the situation is), my usual answer is, “I have a chronic illness called Fibromyalgia. What that means is I have chronic, widespread pain in my joints and muscles. Ice packs help me a lot, so you’ll see me with them often.” 

Now, what I've done here is given a brief explanation that includes a few key words: Chronic, Illness, and Pain. (Remember those, kids. You’ll need them later.) I've also told the inquirer why I use the ice pack (or wrist brace, or whatever) so that in the future, there will be the expectation/understanding that this is normal, for me. My goal is to make what can be an awkward/uncomfortable situation for the inquirer, more comfortable and easy to understand. These kinds of situations can be extremely uncomfortable for the inquirer because often times they feel like they have asked a question that is too personal. (Another reason why I'm doing this blog...to educate non-fibro peeps that it's OK to ask.) 

After I have given you my brief explanation, if you come back at me with the question, “Does it hurt?” I will normally answer, “Yes,” and leave it at that. (I will also be thinking "Here's your sign," in my head.) If you then ask me, “Does it hurt really bad?” I will imagine punching you in the face and asking you, "Did that hurt?" (Yes I'm exaggerating. I would never actually do that, for those of you who are still getting to know me.)

Let’s go back to those three key words I told you to remember:

CHRONIC: This means all of the time, never-ending, FOR-EV-ER.

ILLNESS: Yes. I am sick. Unfortunately this isn't a sports injury that will go away over night.

PAIN: Yes, a Chronic Illness that causes Pain does mean I hurt, all of the time. Some days I hurt worse than others, but it is always there. Always.

Moving on....

DO believe me. When I tell you I’ve reached my limits, or spent all of my spoons, then I have. As a person with a chronic illness, I spend all day every day fighting to make myself look and behave as “normal” as everyone else. I don’t wake up and fight all day long just to use my illness as a cop-out. If I stay up too late, I’m the one who has to answer for it tomorrow, not you. And even though an extra thirty minutes may not seem like a lot to you, that thirty minutes could be the difference between me being able to get out of bed on my own in the morning, or having to have my husband physically help me up. This time I am not exaggerating.

(Please) DON’T baby me. I don’t need to be handled with kid gloves. Don’t get me wrong here. I appreciate sympathy, maybe even a little empathy (although it’s technically impossible unless you’ve lived the illness). However, I would prefer both sympathy and attempted empathy over cruel, disregarding, mockery. I CAN still function. I just have to do it differently than you. My brain is still alert and active (with the exception of my Fibro-Fog moments), but I’m still me. I haven’t changed, my lifestyle has.

And finally,

DO be patient with me, please. I know this is a lot to take in for you, and it still is for me too. I’m still getting the hang of my new lifestyle, so sometimes I will have to cancel our plans on short notice. I know it may seem selfish, but I really do have to focus on what is best for me and my health. Please, try not to be angry with me.

 Well, that's all folks!

Do any of you have DO’s and DON’T’s when it comes to talking about your illness/disability/situation? Everyone has their own story. Some choose to tell it, and some choose to keep it private. You don’t have to have a chronic illness to have pet peeves about telling your story, though. It could be about a recent divorce, loss of a loved one, depression, addiction…the list is unlimited. In all of these situations, people are going to try to help you. By identifying the most productive ways to talk about it, it will not only help you, but it will help those around you to best serve you in your time of need…even if that means to just let you be.