If there was ever going to be a blog that I wrote that would need a disclaimer it would be this one.

Disclaimer: (Please note the blog written below is only the thoughts and feelings of the writer. This blog is not intended to be derogatory or disrespectful to anyone. It is not intended to be insulting or hurtful in any way. It may appear to be a negative post, but it is meant only to open your eyes and help you understand, sincerely the writer.) There that should cover it.

How many times in your lifetime have you heard the phrase, “I know exactly how you feel” or told that to someone in an effort to comfort them.

For me personally, thousands upon thousands of times.

The first time the meaning of that phrase struck a chord deep within my soul, was in February 1999. My mother had passed away unexpectedly, and a close friend was sitting with me at my home, trying to comfort me. She said, “Cookie, I know exactly how you feel!” I looked up at her, with hurt filled eyes, and said, “No, you don’t. You can go home tonight and kiss your mother. You can see her and hug her. I will never be able to do that again as long as I am alive, no you don’t understand exactly how I feel.

Now before you get upset with me think about it. I know that it is meant to comfort us. I know that many times people accidentally say hurtful things and don’t mean it, but we also say comforting things that accidentally hurt the person we are trying to help. From that moment on I was always careful choosing my words when offering comfort to someone. I never wanted anyone to think I was minimizing their sorrow or pain.

So fast forward to 2012 and the reason behind this blog. I was speaking with a friend of mine who has Rheumatoid arthritis and we were having a very heartfelt conversation. When I would speak of my frustrations in dealing with Ankylosing Spondylitis, she kept saying Girl I know exactly how you feel. I hung up the phone thinking to myself does she really?

Now before you all get your panties in a wad or propose a war against me for HOW DARE I.

Hear  me out. Those with chronic illnesses  and life altering diseases all know how each other feels. We know the heartache and fear and struggles dealing with these illnesses.

But it goes much deeper for those of us that live our lives with Ankylosing Spondylitis.

Do you know what it is like… to wait ten to twenty years for your diagnosis?

Do you know what it is like… to receive a diagnosis and the doctor is as naïve about your disease as you are?

Do you know what it is like… to be sent to a specialist who is supposed to be the one to treat you only to hear them say… I have no knowledge of this disease, but we will do the best we can?

Do you know what it is like… to have a disease that affects more people than several well-known diseases combined, yet no one knows what the hell you are talking about?

Do you know what it is like… to have your “specialist” who treats you for this disease doubt you because they don’t understand this disease  enough to know if you are faking or not?

Do you know what it is like… to have every procedure and test done and still have no idea what is wrong with you?

Do you know what it is like… to look at a ribbon for awareness and even small children understand what it is about and no one understands yours?

Do you know what it is like… to need medicine to help you deal with this disease and your insurance won’t cover it because there is limited information concerning your disease?

Do you know what it is like… to have all the symptoms of a disease and then have someone tell you, it is very unlikely you have this because of your gender?

Do you know what it is like… to have people think you are faking because you don’t  look sick?

Do you know what it is like… for the medical profession not to be aggressive in treating you because you lack physical evidence, that is not seen until it becomes to late to reverse the damage done?

Do you know what it is like… to fight for awareness, to a platform of people who would rather support a more well-known disease, because they don’t care enough to educate themselves or the world about your disease?

Do you know what it is like… to wait over thirty years to walk into your specialist office and finally see something on the table, talking about your disease?

Do you know what it is like… for people to just assume you have a bad back, when you know people who are dying due to complications of this disease or struggling with thoughts of suicide?

Do you know what it is like… to send the first responders in your area, a special video to show how to handle you in case of an emergency, and they decline because you are the only one in your area, and it is up to you to tell them? What if I am not conscious?

Do you know what it is like…to wait thirty-two years for a diagnosis then ten years later the doctor wants to check into it, because he is unsure of it?

Do you know what it is like… to have something destroy your life, and you have no idea how to deal with it, so you do it alone, because there is not anyone who knows exactly  how you feel?

Do you know what it is like… to be willing to take medications that could kill you and no one knows if they are even going to help you?

Do you know what it is like…. to stand in a world of billions of people, screaming at the top of your lungs for someone to listen, yet you remain unseen and unheard?

Do you know what it is like… to walk in the shoes of a person who suffers from Ankylosing Spondylitis?

Until you are able to walk in another person’s shoes and know where they come from, what they deal with and struggle with just to survive, remind yourself you don’t know exactly how they feel. Sadly enough those of us who suffer with Ankylosing Spondylitis don’t know exactly how each other feels because it affects each of us differently.

Compassion and kindness go a long way in healing a heart in need.

Simply say I care, or I wish I understood, but I am here for you.

Do you know what it is like… to not know the words you want to say, but you needed to say them anyway?