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How to raise social awareness

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Fibromyalgia
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Posted 6/19/2015 11:06 PM (GMT -5)
Is there anything we, each of us, can do to raise social awareness of fibromyalgia?

I was reading this thread earlier today:

https://www.healingwell.com/community/default.aspx?f=24&m=3410301


It really made me sad.... I am one of those who often feel let down because people around are not understanding or considerate about my situation.

I have built a website as well as started a blog about fibromyalgia both in Japanese and in English so that this could possibly help raise social awareness, but I know this isn't enough. I may start vlogging as well. I was wondering if there is something we can do all together worldwide. It would be wonderful.
Posted 6/19/2015 11:34 PM (GMT -5)
We need our own version of the "ice bucket challenge" or something like that! I guarantee there are thousands of people who never heard of ALS before that went viral and celebrities started doing it!
Posted 6/20/2015 6:21 AM (GMT -5)
I have found that fibromyalgia has gotten a lot more recognition since they came out with an ad on TV for Lyrica. People in my area at least have heard of this illness. That allows me to describe Fibro to them.

But, I rarely talk about illnesses. No matter what...people won't really understand unless they are going through it themselves. Plus no one wants to hear about illness all of the time. We have to realize this because we can get frustrated and angry when they don't understand! After all, we look just fine. You can't see pain so it's understandable that others don't "get it". I don't think I would have understood fibromyalgia before I developed it.

Instead, I just live my life the best that I can with this illness and the other illnesses that I have. I find maintaining a positive attitude helps me a lot and I never say never! This way I still am living a pretty normal life. I know what I can and cannot do and I pace myself when doing anything. There is a wonderful link in Fibro 101 about maintaining a positive attitude when you have chronic pain. I read through this when I'm having a bad day.

Sherrine/blue]
Posted 6/20/2015 9:31 AM (GMT -5)
Sherrine,

You are right; people won't understand unless they are going through it themselves anyway.

I don't expect my boss to understand my condition or treat me better. I have to stay with my current job until spring 2016, and I hope to find an easier job with less responsibility next year.

I'm actually hoping that more men would be aware of fibro. In my past relationships, my boyfriends never understood why I didn't want to physically interact with them. It makes me very uncomfortable laying with somebody unless the person maintains a certain distance. I'm single at the moment, but I don't know how to start a new relationship with fibro. I hope I will find a partner who is aware of fibro or at least try to understand it.
Posted 6/20/2015 9:50 AM (GMT -5)
There are men out there with Fibro and men that have chronic pain...but you don't realize it. They look healthy...just like we do. And, as you know, few men want to announce any weaknesses. smilewinkgrin

But you will find the right person when the time is right. Right now, concentrate on finding ways to feel better and help you control the pain. Once you do that, life will be better. I have had a full and enjoyable life in spite of this illness because I am in control of the pain.

Sherrine
Posted 6/20/2015 2:13 PM (GMT -5)
Here is another side of this equation.

What does public awareness really do? What good is someone else being aware of my issues going to do for me? Wearing an*insert your color here* ribbon is a fashion choice, both sartorial and social. This awareness does nothing to combat the issues, find a way to treat the condition, or make anyone's life better.

I would also add that I don't want to have excuses made for me. I manage my health,and go about my life. In reality, we all have something that we struggle with, that impacts and mitigates how other see us. Some things are visible;others are not easily apparent.

Perhaps a greater emphasis on kindness and civility in public would be more beneficial, allowing the benefit of the doubt for people's shortcomings,within reason of course. Most people try to do their best with what they have.
Posted 6/21/2015 12:16 AM (GMT -5)
I commute into a city every day. It is understandable that people don't offer a fibro patient a seat because they can't see the pain he or she is feeling. However, if people are aware of fibro or any invisible disabilities, they would at least understand why you are sitting in a priority seat. I often get looked at funny, as if they are thinking, "Why is this young lady sitting here?" There is a key-chain that people with invisible disability can carry, and I own one, but the majority of people don't know what it is, either.

I think social awareness can provide a positive impact for our lives, at least it is better than nothing.
Posted 6/21/2015 12:39 AM (GMT -5)
Social awareness education is a personal choice. What do I mean? People w disabilities may want recognition or they may want to be seen as who they are and what they contribute. I am an Independent Living Specialist, among other fancy titles, and walk a fine line here. Hen I need to inform people I speak up and tell them what accomadations I need. Like the seat on the bus. Other times I wish to be seen for my achievements and not colored with pain glasses.
We are indeed getting more social awareness due to Lyricia ads but, this makes it appear that there is a magic pill that cures it all. Bringing us back to whether we explain or not. I think that like diabetes, arthritis and mental health trauma a campagiagn that simply explains "invisible" illness would be a good idea.
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