FIVE THINGS NOT TO SAY TO SOMEONE WHO HAS A CHRONIC ILLNESS

Living a life with chronic illness is no picnic.  In fact, the reason I haven't written on this blog since October of last year is because my Rheumatoid Arthritis took me out.  I was sick for three months.  I missed Thanksgiving, Christmas and New Years.  My disease affects me in ways most people could not imagine.  

I feel like this post of what not to do has been written millions of times.  Everybody has a list of things not to say, things not to do, for the chronically ill, for the grieving, for the special needs mom and on and on.  What not to eat, what not to wear.  The whole world is bossing us around.  Frankly, it seems old and overdone.  But the truth is, people still say things to me all the time about my illness that I wish they wouldn't.  I don't mean to be offensive, but there are some things that I would love for people to know.

1.  Don't suggest cures... 

Have you tried...  A gluten free diet, whole 30, the autoimmune protocol, giving up sugar, Zija, Shakeology, apple cider vinegar, clean eating, exercise, supplements, a naturopath, seeing a chiropractor, juicing, probiotics, and the list goes on.  It's a never ending list, actually.  As soon as we get to the end, something new will appear.

The answer for most of these is YES, YES, a thousand times, YES!!  I have tried many, many things.  I have found some of these things to be helpful.  But let me tell you what drives me insane about this question.  It misses me.  It passes right over my heart and my suffering and offers me a solution.  It says to me, "I don't want to listen to you.  I don't care about your heart.  Stop complaining.  It is your own fault you are sick, if you would just live a healthy lifestyle, you wouldn't suffer."  I get so tired of explaining how many things I have tried, and how things work for a while, and then my disease adjusts and it doesn't help anymore.

There are some exceptions to this rule, but they are few and far between. If you know me well, if you've loved me well, if you've cried with me, prayed for me, listened to me, hurt with me, then you have earned the right to suggest something.  After all, it could help me.  But, when you jump to this first thing, it is incredibly hurtful.

2.  Don't assume you know about my disease...

Autoimmune diseases are complicated.  Even my Rheumatologist doesn't know everything there is to know about RA, and that guy's a genius!  RA does not just give you achy joints.  It destroys your joints.  It deforms them.  If you're really wondering if that's true, I can show you a toe that points in the completely wrong direction, or I could let you listen to the lovely grinding noise my knees make. RA also can affect your heart, lungs, eyes, skin, and even your voice.  One day I was completely bedridden because every time I took a breath, I was nearly knocked over with searing pain in my lungs.  The lining of my lungs was inflamed, for one day.  The next day, I woke up fine.  You just never know where it's going to hit and how long it's going to stay.  

3.  Don't tell me to lose weight...

"If you could just lose 20 pounds, you would feel so much better."  When mentioning how much my knees hurt, "You know, honey, you are overweight."  NOT HELPFUL!  This really is the worst, because if I knew how to do that, I would have done it 20 years ago!!  I have struggled with my weight since I can remember.  I have tried every diet known to man.  I even juice fasted for 7 days.  I gained 5 pounds.  The only thing I lost was my will to live.  I am just done with all of that.  One of the symptoms of an autoimmune disease is unexplained weight gain.  Unexplained.  If all of the science community cannot explain it, you probably can't either.  I am doing the best I can over here.  

4.  Don't assume because I look good, I feel good...  

I know how to hide my pain.  I've done it my whole life.  I can sit through a church service at a 7 on the pain scale and you wouldn't know anything was wrong with me.  My husband can tell, but only because he knows me so well.  People who struggle with chronic pain know more about pushing through physically than someone who's never had pain ever will.  We will collapse when we know it's safe to collapse.  Until then, we'll muscle through until we can't take it anymore, and you probably won't have a clue.       

5.  Don't tell me to stop taking my medication...

I take some pretty powerful medications.  They can be scary to people.  I get this.  Do you know why?  Because they scare me!  Anybody who takes these medications knows the risks.  I have done more research than you can imagine.  My husband and I have prayed and agonized over this decision, and we have chosen to take the meds.  If you didn't choose to take the meds, I understand, and I don't judge it.  It's a personal decision and I respect it.  Please, do the same for me.  I want to do everything I can to live as full of a life as I can for my husband and my children.  They are my world.  If I can help it, I don't want their memory of me to be that I was always in bed, always in pain, never engaged in life.  For now, the meds are helping me do that.  I don't know what the future holds, this is the way I'm choosing life today.  

What should I do?

So now you may be asking, well what should I do?  My answer is, the same things you would do for anyone else.  Show compassion. Listen.  Ask me questions because you really want to understand, not because you want to tell me what I'm doing wrong.  Try to see things from my perspective.  Ask me how I'm feeling and care about my answer.  Be my friend, tell me about your life, let me listen and show you compassion too.  I don't want one sided friendships, I want to give as much as I receive.  Because underneath it all, we're all the same.  We all struggle, we all have pain, maybe not physical pain, but pain none the less.  Be kind and loving to one another, that's really all any of us long for.