Why Rainbows No Longer Appear Where I Tread, nor Butterflies Sparkle Forth From My Lips When I Speak…

This is a post by Kristine on A Life Well Red.

Dear Friends,

You say you have noticed a change in my personality over these last couple of years. That I just don’t seem like myself, and that I can be a bummer to be around at times. You ask why I can’t ‘just be positive’, and find a way to ‘put a smile on my face’ regardless of what my problems may be.

So…did you miss the part where I have mentioned to you several times that I have a chronic illness? ‘Chronic’ meaning that it never goes away? ‘Illness’ denoting something within my body is not quite right? I may be going out on a limb here, but did it occur to you that being in pain almost all of the time may be the reason for my occasional ‘negative attitude’?

Look, I understand that you don’t ‘get it’. Most people don’t. Heck, if I wasn’t the one walking around in a 90 year old body at the age of 49, I wouldn’t ‘get it’ either! Unfortunately, I was not given the option to choose whether or not I wanted to comprehend the full depth of the disease known as Fibromyalgia.

Yes, I know you do not think it is a ‘legitimate’ disease. Neither does most of the established medical community. In fact, many of them do not even recognize it as being real. I have a friend with Fibromyalgia who’s doctor actually said to her, “I don’t believe in that.”…What?! Would you say the same thing to a patient with diabetes? Does simply closing your eyes tight, and denying the reality make it go away? What are we, 5 years old?

This is why FMS is one of the ‘invisible diseases’. There are no agreed upon bio-makers for doctors to point to for a clean diagnosis. We generally do not ‘look sick’. Meaning, our outside appearance does not match what we are truly experiencing on the inside. If it did, you would see a mass of red, blue, and purple bruises all over our bodies. Not to mention the fact that the fatigue that can take over our minds feels like the equivalent of replacing the blood in our body with cement…and you wonder why I’m just not as ‘perky’ as I used to be!

So, if I am not as fun to be around as I have been in the past, and my countenance is a little long, it just may be that I am struggling with a level of pain and exhaustion you know nothing about. It may be taking every last bit of my energy stores just to sit there and carry on a conversation with you in a ‘normal’ fashion. Trying to hear what you say, and respond in an intelligent manner through the pea-soup thick fog surrounding my brain (another wonderful side effect FMS).

Here is the bottom line. I do not think you fully realize just how truly hard I am trying. It can take every ounce of will that I posses at times just to haul myself up off the couch, put together a semi-acceptable appearance, and force myself out the door to fulfill my duties. Not the least of which is the obligation of maintaining my personal relationship with you. So, be patient. Before you pass the judgement on me that I am just being a ‘drag’, ask me questions about my health condition. Want to understand what I face everyday so that you can at least empathize with my struggles.

The same funny, intelligent, quirky person you fell in love with in the beginning is still there. I am just trapped at times underneath the layers that chronic illness can throw over me. Relationship when times are good is an easy road to travel on together, but the willing endurance through the darker seasons for the sake of love, that is a friendship everlasting.