What people who suffer with Chronic Fatigue Syndrome and Fibromyalgia wish others knew

So many times since my diagnosis of CFS and FM, I have wished I could just say the things I wanted to when faced with the stares and sneers , critics, pushy people, unbelief, frustrated loved-ones, and even well meaning people.  There are also times I’m glad that I didn’t say some of the things I was thinking. I have tended to get somewhat frustrated when I pass some really energetic, athletic, beautiful, and happy female in Wal-Mart.  I get livid when they smirk at me with that snobby haha look at you then look at me look.  Ladies, you know the one.  (But, that’s another story.)  I have decided to make a list of some of the things I wish people understood about CFS and FM.  Perhaps, we should be honest with people about the way we feel or the way they make us feel; in an appropriate way of course.  What do you think?  So, here are some things I have come up with and faced in my life.

 

1.   We are not hypochondriacs, just depressed, or mentally ill.  We simply have a lot of symptoms and yes sometimes get down.  Who wouldn’t get down with an extended period of severe exhaustion and pain?

2.   We are not just being lazy.  If you don’t believe us, watch us when we are feeling even the slightest bit better.  We’re running around like there is no tomorrow trying to get all the stuff done that we couldn’t while we were incapacitated.  (This incidentally, often causes us to go right back into a flare so FM and CFS sufferers do things slowly and in moderation.)  We would love nothing more than to be back to our old active selves because we miss all the things we used to have fun doing.

3.   We are not trying to get attention.   Being identified as the “one who is always sick” gets old pretty quick.  Whenever we have to have others do tasks that we cannot do is actually quite a blow to our identity.   Oh, and getting stared at every time you venture out to run errands is always a treat too.   

4.   We are not over-exaggerating the pain and exhaustion.  We absolutely LOVE spending days on end in bed or on the couch and not being able to take 5 steps without wanting to cry.   Having 90 year olds blow past us like a NASCAR star and we are on a moped is a total blast too!

5.    One of the worst things to say to us is “just suck it up and deal with it” as if we are weak, just giving up, and not trying hard enough.  Like you could do any better than we do in the same situation and you actually know what we are going through.

6.   This one is for doctors.  Please do not dismiss our symptoms as stemming from “just being a wife and mom”.  Don’t just chalk it up to being depressed either.  The exhaustion and pain is much worse than what we had ever experienced before and we are coming to you because we really need help!

7.   We know we look “healthy” on the outside, but that doesn’t mean we do not have a chronic illness.  An egg may look perfectly edible on the outside but be totally rotten on the inside.

8.   We really do need the help from our families and friends at times just to get things done and please don’t be offended if we don’t take you up on a night out.  We are just too tired and in too much pain to do anything but crash on the couch or in the bed. 

9.   We already feel guilty and stressed enough.  No guilt trips are necessary.  We are not chronic whiners, we just need to get our feelings out.  Would you like it if someone made you feel guilty or like a big baby for having the flu? 

10.  Having to take medicine does not make us weak or drug addicts. 

11.  We are still the same people we were before we became ill.  It’s really hard to keep fighting to keep our identity when our whole lives are totally controlled by pain and exhaustion.  Remind us that we are still just as amazing, beautiful, valuable, needed, and wanted.

12.  One of the things we really need the most is a sympathetic ear, encouragement, a good laugh, a hug (without squeezing too hard), inspiration, your prayers, your understanding, and just your support in general.

While symptoms can vary from person to person, I believe that there are certain themes, concerns, and needs that run throughout the Fibromyalgia and Chronic Fatigue Syndrome community.   In fact, I would imagine that these points would ring true to anyone with a chronic pain and auto-immune disorders.  It helps to remember that there are others like you who are experiencing the same things that you are.  Reach out and find relief in connecting with others who really understand.  For those who have the support of family and friends, count your blessings.  For those who have no one or perhaps worse, live with loved-ones who criticize you, determine to find someone who will be there for you both online, and in the real world.  Chronic illness is much easier to bear when you know that you are not alone.  And if at times you feel the need to just tell someone what you are feeling, then just do it.  Learning to talk about FM and CFS is tremendously liberating, a lot healthier than trying to hold it all in and feeling too embarrassed or ashamed to for fear of being labeled.  Talking about these illnesses also brings more attention and understanding of them.   Approach “well people” in a considerate way and keep in mind that most people cannot fully understand what you are going through because they have never experienced it.  If someone would have told me that FM and CFS would be so debilitating prior to my onset and diagnosis, I wouldn’t have believed them.  Keep on fighting and celebrating even the smallest of victories.