Invisible Illness Awareness Week ~ Do You Think People Notice?

With so many National days on the calendar now ranging from National Waffle Day to Fibromyalgia Awareness Day, is anyone even paying attention?

Does anyone even know? What's the point of trying to bring awareness one day of the year if no one wants to hear about it the other 364 days of the year? Does it even actually bring understanding to those who haven't been touched by the situation or disease? It seems I am not the only one who wonders about that.

One of my young adult friends was struggling with the idea of the need for Suicide Awareness Day. The topic hits really close to home for her and she posted about it on her Facebook page. "My problem with the day is that wearing yellow and writing love on your wrists (or whatever the plan is this year) does about as much to prevent suicide as say dumping a bucket of ice over your head cures ALS." She went on to say that the reason she was so bothered by it was that she felt that most of the people who were involved were only involved that one day and ignored it the rest of the year. 

I have been thinking about this since the ALS challenge had gone viral and the youth in my area were taking the challenge in a different direction. It became a name calling, one upping, do it or else kind of thing. There seemed to be no awareness of why they were doing it, even stating on video that they were doing the "ASL" challenge or "the ice thingy challenge" with no mention of the disease. I felt frustrated.  If there was that much attention being focused on ALS and it still wasn't bringing awareness, what would?

There are many invisible illnesses out there that people have heard of but don't know how they affect people or why. The stigma and judgment cause most of us to keep quiet whenever we can. We don't want to talk about it because of what people might think. Or worse, we already know what they think and don't want to hear it.

By keeping quiet and not speaking up, are we doing more harm than good the rest of the year? People may have heard about the illness we have and look at us as an example. Maybe, their idea of the illness is altered because they see us being strong. It makes me wonder, could we be causing others to judge someone else more harshly because we are better at faking well?

Since I started my Facebook Page and this blog, those closest to me have had the opportunity to finally see a glimpse into my private hell. At first, some were taken aback and seemed a little concerned that I was concentrating too much on my pain. Maybe, it's because it isn't always pleasant and comfortable to know the truth. I have been living with this for over 10 years. I hurt every day, not just once a year on Awareness Day or once a week on Awareness Week.  My entire life changed and nearly everything I do affects me. Yeah, I might think about it often! I just had been choosing to keep that part quiet and not share it. But, then I realized that there were so many others who shared my illness, my pain, my trials and my desire to strive for a great life while facing the possibility that this could be the best I ever feel again. I am not really sure whether they read my posts any more and that's okay. 

I carried a lot of guilt and shame over the last many years . Once I started truly accepting my illnesses, I was free to talk about them and stop trying to make excuses. At the risk of eye-rolling, judgment, or friends that just don't want to hear it anymore, I will continue to post on my personal Facebook page, my support page, blog, and talk about it regularly and not just on the designated days. It keeps people aware. After all, I have really good days where the pain is low but it is still there every day.

Of course, this isn't the ONLY thing I talk about. I am much more than just my illness! But, if it comes up in conversation; if I cancel plans; or if I am having a really rough day, I am through saying, "I'm fine, just a little tired." I have found that there are people willing to listen and try to understand if we have the courage and take the time to explain. I can't be frustrated because people don't understand if I am not being honest with them in the first place. What do you think?