Tag Archives: chronic

An Open Letter to Other Healthy People

Be careful who you judge.  Be careful how you judge.  Tides always turn.

Dear Other Healthy People,

I live with a mixed bag of autoimmune diseases, and have for many decades.  They are what we “spoonies” call “invisible illnesses.”  In other words, most often we look just fine on the outside, but we feel like holy hell most of the time.  Because of this, people like me are misunderstood a lot.  We lose relationships because of it even.  We are thought to be lazy, disingenuous, feigning, or just outright lying about our symptoms and how shitty we feel.  We are thought to “use” our diagnoses to get out of social situations or work and chores. It’s hard to even get physicians and other healthcare personnel to take us seriously, and more often than not, it takes many years to even get a diagnosis because of it.  So the lack of understanding, empathy, knowledge, and just general trust from loved ones and healthcare personnel is not only extremely frustrating, it’s also dangerous.
Please don’t tell me you understand when you clearly do not, and let’s be honest, cannot. If you think it makes you mad when I tell you not to say this, imagine how angry it make ME when YOU say it!  There isn’t much more aggravating than someone who tells me they understand, then turns around and is a perfect example of someone who clearly does not.  Just don’t say it.  If you feel like you need to say something, search your heart first, or just don’t say anything at all.  
If you love someone with an invisible illness, then love them just as they are.  It isn’t going to change.  It isn’t going to go away.  This is what you have.  This is what we have.  We may have good days, and we may be fortunate enough to go even very long periods feeling great!  But don’t be a toxic cloud when we don’t feel good and we aren’t able to accomplish all that we’d like, or maybe even all that we’d promised. We are already tired of feeling guilty about what we have no control over.  Believe me, no one — NO ONE — beats themselves up more about not being able to do all that they want to do more than we do.  NO ONE!  So we surely don’t need you spreading your nasty little comments and attitude around as well.  That serves nothing but your own ego about how much greater you must be, and how angry you obviously are that things are the way they are.  Thanks for absolutely nothing.
Have you ever thought about how hard it is to be a healthy, active, strong person one day, and then not be able to move the next, be in constant pain, and then have that rarely ever change?  In our heads, we are still those healthy, vibrant people — just dying to get out and be who we really are.  It’s a cruel joke.  It’s physically and emotionally painful.  So take your disdainful looks, your snide comments, and your whispers behind our backs, and shove ’em! And now pray that you don’t end up like this, because God knows that many of us have prayed for you to end up just like this so you can know, if even for a day, what this is like — to be stuck in a body that refuses to cooperate, that is at war with itself, that inflicts constant pain and confusion, organ failures, threatened with early demise, and refuses to ever be replenished by any amount of rest and sleep.  I won’t even get into the horrible medications and treatments we must face.  
None of this is to have anyone feel sorry for me or the rest of us.  It’s simply to say, “Get a grip!” to the rest of you.  Either be all in with us, or get the hell out.  Seriously.  This is exactly how I feel.  We have enough to deal with to try to stay above ground and have a smile every day without having to deal with people that don’t even deserve to be in our lives in the first place. So now you can’t say you don’t know.
If you have a relationship with me, the truth is you don’t know what you’re going to get from day to day, and even hour to hour.  I’m sorry, and I mean that.  It’s hard, and I know it.  I also know I’m worth it, and so are the few who have stuck with me.  
Oh… I almost forgot.  We don’t expect you to understand it all.  Just believe us and love us anyway.
Yours with Tenacity,
A Spoony named Debora Lynn

A Note to Myself for You to Read

Don’t Let the Monkey Bring You Down

Every day I DON’T want to go to my exercise class, and then every day I’m so glad I did.  Hot, sweaty, and sticky, and I still feel better than when I walked into the class!  This is what I’m retraining my monkey mind to default to, to remember.  I woke up this morning and every single joint in my body hurt.  It’s so easy to just live in THAT moment.

My biggest fear is that my body will be so worn out from constantly fighting itself with this lupus that I won’t be here to see my 60’s.  I’m not complaining; I’m really reminding myself what’s the most important between struggling with lupus and doing what I MUST do to be here in 10 years and BEYOND.  No one likes hearing the “bad” stuff on Facebook about our lives.  But I’m here to tell you that you can MAKE the bad stuff something to learn from and make it something to look BACK on.

I was an athlete once.  I still have the heart and mind of one, and of a competitor.  It’s been SO hard not being able to do the things I once did – and not all that long ago.  So I’m declaring that I’m in a race that isn’t over until I say so… which isn’t one of the options.

Probably the hardest part about it is the constant pain and fatigue, of course.  The second is the brain fog… I sound like an Alzheimer’s patient sometimes.  The third is dealing with people not believing me or making up things about me when I can’t follow through on something, can’t finish something, or just plain can’t move.  And you’d be surprised (maybe) from whom some of the criticism comes. Sometimes it’s direct, but more often it’s subtle, behind my back, or I can just feel it from some.

I have been mindful of my self-chatter – the talk that no one else hears but me.  It can be a dangerous thing.  I’ve been practicing being mindful of what I say to myself as we’re doing the various exercises and stretches in class.  Sometimes I’m really hard on myself (You should be able to do this!); other times something might just be so hard to do (My arms are killing me!); and then there’s old faithful (You’re one of the youngest ones here! You should be smokin’ these old ladies!).  Yeah, I do that to myself, and I’ll bet most of you do something similar.  So I’m working on being kinder to myself, focusing more on the result I want instead of the momentary discomfort, and very importantly, making sure I’m listening to my body when it REALLY is time to stop or rest.  Sometimes the competitor in me doesn’t want to hear it.

So… whatever it is you need to do to have a life worth waking up to every day, make that MORE IMPORTANT than the woe-is-me chatter in your mind, the self-defeating talk, the achy joints, the extra plate of food, and certainly more important than whatEVER the haters and naysayers (who don’t live in your skin, by the way) EVER have to say!