6 Things Spoonies Won’t Admit to Their Family and Friends

Having a chronic illness is like carrying a 50lb bag everywhere you go.  You feel tired, worn down, and you can’t concentrate on anything but the bag you're carrying.  It’s heavy.  So is chronic illness.  Heavy.

The thing is you have an amazing support system.  Friends and family who listen and empathize with the way you feel.  Who may not fully understand the heaviness of your invisible illness but they support you.  They make sure you’re heard, that you get to doctors appointments, and that your needs are being taken care of.  They’re amazing, and you’re alive because of them.

But this is your 50lb bag, not theirs.  In the world of dysautonomia there’s things that we just don’t tell our friends and family.  Send them this article to let them know the way you’re feeling when you can’t quite say on your own.

◉ I feel like a burden.  

You have been carrying me for most of my life.  I feel guilty around feeling like a burden to you.  I want you to live your life to its fullest and I feel so very guilty that I am keeping you from doing that.  You shouldn’t be carrying my 50lb bag.

◉ My illness may not be terminal, but it’s life encompassing.

I know I’m not going to die from my illness, but sometimes it truly does feel like I might. And there are days when I can’t move past that.  Most of my thoughts are about symptoms from my chronic illness.  It’s exhausting.

◉ Sometimes I’m jealous of you.

The grass is always greener on the other side, right?  I get jealous of people who are healthy.  They may have some ailments here or there, but it’s nothing like what I have to go through each day.  It’s not fair to me to have to feel this way all the time, and I think “normal” people don’t fully understand how exhausting it is just to exist some days.

◉ Sorry I didn’t reply to your text/call or go through with plans.

It was a low spoons day.  Meaning, I didn’t have enough energy to function on a basic level.  Brain fog and fatigue were taking over, and it felt like too much in the moment.  

◉ I love spending time with you, but it takes too much energy.

Have you ever gone to an event with a lot of people? You have to be super focused on what is going on.  Or maybe it's a new experience you’re having.  Your brain is on fire with the energy it takes.  Spending time with you is good for my soul, but it takes a lot of my physical and mental energy.  Energy I have to use that sparingly just to do basic things throughout the day that you may take for granted.

◉ When I say “I’m fine” I’m really not.

Our society is so engrained to live this perfect life on social media and the burden of that carries over into real life.  It’s no longer socially acceptable to not be okay.  And, even if it was, I don’t want you to worry.  I’m often not okay, I’m not fine.  But I don’t want you to be dragged down by how I feel so I just tell you I’m okay.

The people who are meant to be in your life want to love and support you.  Emma Stone said, “What sets you apart can feel like a burden, but it’s not.”  Let go of the fear you have associated with being a burden to your family and friends.  Their love for you is so strong, and they want to carry a bit of that load for you.  Remember that talking to someone can be enough to help you through these thoughts and feelings that are so hard to share with family and friends.

Have you felt this way?  What are some other things you simply cannot admit to your loved ones?  Did we miss any?  Leave them in the comments below.