Don't judge us and leave us behind

May 12th is ME awareness day. 

ME stands for Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome or CFS.
This is one of the conditions I suffer from. It causes fatigue that is not relived by sleep. 

Life wasn't always like this for me. Looking back I remember having an active social life while working 40-60 hours a week. After work I would still go out and socialize and be up to all hours of the morning just to do it all over again.  It was not a quick switch it happened gradually. At first I just assumed everyone felt like crap after working really hard and long hours. Then came the time I couldn't deny something was wrong any more. Lifting my head off a pillow seemed near impossible not to mention daily tasks. It wasn't just fatigue but horrible pain that was making me sick and dizzy.  I talked to my Dr and was sent to be tested by a specialist for fibromyalgia. I was in so much pain I couldn't walk or sit down. Someone giving me a simple greeting with a hand on my shoulder would send me in to a dizzying spin. The specialist diagnosed me with fibromyalgia, chronic fatigue syndrome and myofacial pain syndrome. 


This was back about 5 years ago now and people still don't seem to understand the conditions. People think cause they know someone who has it or have read or heard about it and some quick fix. So I must not be trying enough to "get better". Despite what people think I don't like being sick! That's what I try every remedy and trick people say works. It's why I work with a team of Drs and medical professionals. They know and I know it's a long road to finding where you can live and manage a semi normal life with these conditions.  I am so lucky I have such a great team helping me. 

If I could say one thing is missing it is understanding of invisible illnesses from society. Just cause I'm young doesn't mean I'm not in pain and I'm not suffering. Don't judge the young person walking with a cane. Don't judge the person who looks over weight and you think they just pig out on junk. Don't judge the person using handicap parking. You don't know their story you don't know their pain. In all likely hood they feel bad enough about there meds causing weight gain or having to use a mobility aid. 

It's not even just the people you don't know. You may know people who don't talk about their suffering. That friend that's a flake and never seems to come out. Maybe they are to tired and know it's unsafe to be driving. I have been that friend who says no and slowly gets forgotten and never asked to hang out cause people thought/ think I just don't want to. Well you know what most days it takes all my strength to get dressed. And just sitting with people in my own home chatting for and hour or so is enough to lay me up for sometimes days. It just takes all my energy. 

What I want you to know as someone with chronic illnesses is no we aren't flakes. We are trying to look after our self. Please remember and still ask us to do things even if we often can't. And definitely please don't judge us and write us off with out at least talking to us and getting the whole story. Education is key. If you understood and knew what we were dealing with maybe you wouldn't say those pointed comments. Or wouldn't stop calling. And those of you who do ask questions and try to understand. Know you are one I a million. And we cherish having someone like you who supports us and try to understand. You will never know how much it means for us to have you so one who didn't write us off. 
Thank you.