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Wednesday, 30 March 2011

M.E. is...

Often when I tell people that I'm disabled they look at me and say "But you look so well and healthy."  This leads me to explaining that M.E. is invisible and while I may appear okay today, it fluctuates so often I am unable to move very much at all, and sometimes can't even get out of bed.  And then comes the response, "I know what you mean, I have those days too."  This post is to show that no, you don't have those days too (if you suffer from M.E., feel free to skip this post) and that no, you don't understand.  I don't mean to sound so callous but it's true.  But to help you out I'm going to try and give a few examples of what having M.E. can be like.  Please bare in mind that this is just my experience with it and I am relatively well in comparison to many sufferers (I can leave the house some days and I'm typing this).

-M.E. is needed the toilet badly but being unsure if you can physically stand to make it to the bathroom.  Every time is a choice of extra excessive pain or doing your business where you lie.

-M.E. is not allowing your partner or friends to hug you because the lightest touch feels like you are being punched.

-M.E. is ordering take-out again (even though you had it the day before and you're broke) because you aren't able to prepare yourself anything.

-M.E. is wanting to write this blog post last week but not being able to as you can't concentrate on what to write for more than a minute or so.

-M.E. is seeing the gorgeous sunny days happening outside but knowing that if you go out and enjoy it you won't be able to do much (if anything) the next day.

-M.E. is wanting to go to the gym every day simply because you know you can't.

-M.E. is putting on weight because you are unable to walk far, let alone do proper exercise.

-M.E. is knowing that the majority of people you tell, think you are either lazy or lying.

-M.E. is jumping every time a car drives past or something is knocked over and causes a noise.

-M.E. is crying every night for the life you know you can't have.

-M.E. is spending every day feeling exhausted but when it comes to bedtime you are unable to fall asleep.

-M.E. is losing friends because you aren't able to go and see them anymore.

-M.E. is knowing that your only social life is online.

-M.E. is knowing that you want a full-time job but will be lucky to cope with a part-time one; unfortunately you are overqualified for all part-time jobs.

-M.E. is catching every illness and disease that comes near you.

-M.E. is feeling like you have the flu every single day for your entire life.

I hope that this has helped you understand the life I live a little bit more and next time someone tells you they have M.E. please don't say you understand (unless you really do).  If you have any questions I will be happy to answer them and if you suffer from M.E. feel free to add to the list.

5 comments:

Deb said...

"I know what you mean, I have those days too." People say stunningly ignorant things in their attempts to relate.

Since a friend relayed a tale about how folks are always asking another of her friends, "When are you gonna have kids?" I've tried to be really mindful about what I say. In that case, folks ask a seemingly innocuous question, not realizing that very personal question will actually leave its recipient crying for an hour. She very much wants to have kids, but is very much physically unable.

After my mom died, people kept saying, "At least she's somewhere better!" Dumbasses, the point is, she's not WITH ME. I know she's no longer suffering, and I know that's good. But I also know I want very much to call her and have her call me "gorgeous" one more time, y'know?

I try to make it a point now to say, "I'm so sorry for your loss."

I see so many examples of this day after day. It's good for people to try and understand, but simply saying the words doesn't make it so, and in a way belittles the suffering someone who has to deal with it every day endures.

dominique said...

Great job on this post.

I think people aren't just ignorant but I truly believe they have no frame of reference.

How do we truly help someone understand that our energy levels are so bad that we are experiencing a deficit that prohibits us from doing the simplest of tasks.

And yet, several days later, we seem to be more able.

I think the day we no longer have to have this illness referred to as Chronic Fatigue anything will be the day that we can move forward with understanding.

I hope you are doing better today, my friend.

Thanks for sharing.

Bethany Mason said...

Thank you both for your comments. I honestly believe that when people try and relate to us in this way that they believe they are doing the right thing. I hope this post helps explain that a comment like that can be very harmful - you are right Debs, people just don't think before they speak in some situations.

And Dominique, I completely agree that the title of 'Chronic Fatigue' is very inacurate, hence I tend to use 'M.E.' (and people usually show more understanding with this answer anyway). I also believe that the main problem we have is that both names are used to cover so many different aspects of disability that it would be better for there to be many names rather than one sweeping one that covers everything.

February Grace said...

People say things and have no idea how they sound.

How much better it'd be if they just said "I'm sorry for your pain." and then maybe offered to do something- the smallest thing- to really help instead of trying to cheer you up with platitudes that don't help in the least.

(You wouldn't believe how many people have said to me, "Oh, I'm practically blind without my glasses too!" They have no idea what they're saying to me. That is nothing like living my life.)

I'd never claim to understand another's experience even if I had the same illness. Every human's experience is unique.

All I can say is, I'm so sorry for your pain, and I hope you can surround yourself with as many helpful people as possible to help you carry the burden.

~bru

Bethany Mason said...

Thank you for you kind and thoughtful comment Bru. You seem to have the same thinking as I do - I never claim to understand someone else's life, though I am happy for them to try and explain it to me if they want.