The blogs purpose is to share the personal journey of life with a chronic illness. A disease called Fibromyalgia. Most Fibromites know that communication, while crucial, is extremely difficult. The reasons for that are as follows:
* We suffer from something called Fibro-Fog which makes it hard to maintain a train of thought. We forget the simplest of words. We forget where we were at in the middle of a conversation or while writing. Fibro-Fog shares many characteristics of dementia or Alzheimer's. Thus, we trail off and stammer, trying to remember what we were going to say. There is a disconnect that happens randomly in our brains that we cannot help or change. It's a humiliating experience for us so often times, we choose not to share.
* Fibromyalgia is an invisible disease. By that, I mean, we do not look sick. Because of this, we are used to people not believing that we are truly ill. That disbelief and the looks, comments and questions that come along with it are hurtful. Rather than risk that hurt or the anger it can cause, we don't talk about it.
* Most people are hard-wired with a belief that to be strong or to at least appear that way, they shouldn't 'whine' when they are ill, in pain, depressed or confused. Fibromyalgia patients already feel worthless or like a burden, quite often. Sharing everything they are going through with the disease can make them feel those things more-so. We also have to put our pride aside to be that open and that's difficult when pride may be the only thing holding us together in that moment.
* We do not want to worry our family and friends. They love us and it's very important to Fibromyalgia patients to continue being everything those close to us need. We want them to see us as the strong, vibrant person they are used to - not the shelled out husk that we often feel like.
* It's exhausting to talk about. We are already so tired and in so much pain that doing the simplest of tasks takes monumental effort on our part. When we think about trying to explain what we're going through to others, we know it would take a very long time and quite simply, we don't have enough left over to do that. We're also aware that while others may sympathize, they will not really understand unless they too have a chronic illness/disease. That leaves us feeling hopeless and lonely.
With all of that said, it remains important to find a way past those reasons and educate others to not only Fibromyalgia but other chronic illnesses such as - Multiple Sclerosis, Lupus, Rheumatoid Arthritis, Crohn's Disease, Chronic Fatigue Syndrome, etc. They are very real and affect millions of people worldwide.
If we, as the diagnosed, do not reach out to offer that education, that personal view of living life with an invisible disease, people will continue to be misinformed and sadly, quite often, careless of it.
We have to speak up for ourselves, we have to show people that while they cannot see how debilitating and life changing chronic illness is - if they love us, if they care, it is an expectation that they also take the time to educate themselves about what the diseases are using books, articles, videos and the internet.
It is an expectation that they become our advocate too.
It is an expectation that they communicate their feelings and listen to ours.
It is an expectation that they believe in our illness.
And it is most definitely an expectation that they love us through it, that they show us the same compassion they would to someone suffering through a visible illness.
We are worth that.