• October 16, 2018

Autoimmune Dis-ease: The Power of ‘I Believe’

Autoimmune Dis-ease: The Power of ‘I Believe’

Autoimmune Dis-ease: The Power of ‘I Believe’ 900 600 Stacey Robbins

 

 

First of all, for anyone who knows me personally or has read my book, “You’re Not Crazy and You’re Not Alone” you know this:

I am not into the whole victim mentality.

Now, that doesn’t mean I haven’t acted like a victim

Or that I don’t still dip my toes in the pool of victimhood from time-to-time

Because I do.

The difference between then and now is that I notice it faster and jump out of it more quickly than I did before.

I’m not into people using their diagnosis as an excuse to be a major asshole or as a reason to make the world revolve around them.

I’m telling you that up front because what I’m about to address is super important for people who are dealing with an autoimmune condition and for people who live with or love someone with an autoimmune condition.

It’s the power of

I believe.

Two coaching clients in the last two days reminded me of this.

I Believe You

One told me a story that was a risk for her to share and I didn’t understand how big a risk until part way through.

And let me say this: over the last 18 years of counseling/coaching people, I have heard a broad spectrum of deeply specific accounts of painful experiences people have gone through. Events and their effects that make you ache for days, months or even years when they come back to your mind.

With that said, I have never heard a story like I did yesterday.  It was unbelievable.  And my client’s worst fear was just that:  me not believing her — and all the accompanying disqualifications that come with that disbelief.

I told her, “I believe you. Without a doubt in my mind, I believe you.” And she cried.



The power of “I believe you” is huge.

 

For the person with an autoimmune disease it means, “I don’t have to convince you, persuade you, cajole you, manipulate you by proving how sick, broken, hurting and injured I am.”

And that, is a relief.  Because when you live with an autoimmune dis-ease like Hashimoto’s, EBV, SLE Rheumatoid Arthritis, Chronic Fatigue,  and the varied host of others, your life is often rendered sprained

And not broken.

You’re not lying in a hospital, with all your limbs in casts and lifts, evoking “oohs” and “sighs” of pity and compassion.

Your head’s not shaved, you’re not in a wheelchair, and you’re not carting around an oxygen tank behind you.

Those things are physical signs that say, “Hey! There’s something believable and justifiable going on with me.”  People step aside, hold the door, and send silent blessings.

But when you have an ‘invisible dis-ease’ you might look okay on the outside.  Your appearance might look put together but people don’t really grasp that it’s an inside thing that:

levels you with depression,
while it amps you with anxiety,
slows you to a halt,
fogs out your brain,
disrupts your speech and cohesive thoughts,
leaves you unable to function enough to put a menu plan together
or take a trip to the grocery store

or pick up the house,

or drive on the freeway,

or handle bright lights,

or loud noise,

or fast movements,
or certain foods,

all because you feel like you were hit by a truck.

And when you look okay on the outside, but can’t seem to pull your life together, people say stupid shit.

Things like,

“Everyone’s tired.  Just have a cup of coffee and get going.”

Or

“Isn’t there a pill for that?”

Or

“Oh, a friend of mine has that same thing and she’s fine.”

Or

“Well, we’d all like to stay home and not work. Can I say I have that, too? Lol.”

Or

“Your poor husband. That must be so hard on him.”

And on and on and on and you want to just turn to them and say,

“Fuck you.”

And here’s the thing about talking to people who don’t believe you:

They also don’t believe anything you say to defend yourself.

It’s like they took their ears off and put them in their pocket.

They can’t hear a damn thing you’re saying.  Because they made themselves the judge and created an atmosphere of “Guilty until proven innocent”

And you have to decide:

Am I going to take my small bits of energy and plead my case to someone who has already judged me?

Or am I going to save my energy, walk away and allow myself to be misjudged?

Makes me so frustrated just writing this.

A few years ago, I had one family member, whom I rarely see, notice that I was limping.  She sort of condescendingly asked, “What’s wrong with you? Why are you limping?” Like she didn’t know I had been dizzy and out of commission for a year and a half. She knew.  She just didn’t get it. Because she didn’t want to.

I answered, “I didn’t realize I was limping. I have to walk slowly because of the dizziness.”  She didn’t understand because she didn’t believe me. I felt it in her tone and how she walked faster next to me when she heard my answer.

I was so sad. I didn’t know what to say because first of all, I love this person and would love to feel their compassion instead of disdain.  You just can’t make someone believe you when they’ve already decided they don’t.

And you have these impulses where you want to try to not limp, because your pride and desire to be ‘normal’ and ‘accepted’ rush to the surface.

And then, there are other urges to start spouting lab tests and producing doctors notes to prove how sick you really are.

It’s like a kid who does extra coughing for the mom who doesn’t believe he’s too sick to go to school.

When you start spending your energy defending how sick you are, you end up sicker and more deeply in your own story. That’s not healthy for you.

But then, this other thing rises up that says, “Screw it. I can’t.  Part of why I got into this mess was by trying to please ‘un-pleaseable’ people so that they might love me.”

Not long after that night, I went to a doctor who explained to me how our muscle memory is so affected by our equilibrium that when it’s off, our body is literally learning how to walk again.  That’s why I was limping.  That’s why my thighs ached all the time.

I wanted to go back to her with some doctor’s note and throw it at her and say,

“By the way,

fuck you.

But I didn’t.

Because it was a lesson to me, again, to believe in me and to honor me, even if the people who say they love me don’t act loving and don’t understand.

It was also my opportunity to forgive.  Forgive her for judging me and forgive myself for letting myself get sucked into the need to be understood by someone who was committed to not understanding.

It’s like expecting a cat to bark.

No bueno.

Major waste of time-o.

The good-powerful thing that happens when you say to someone, “I believe you” is that the energy of needing to prove how sick that person is, goes away and the partnership to move forward in healing begins.

When you believe someone, you get their trust to travel together.  But that’s only part of it…

 

I Believe in You

 

I end my coaching sessions with a time of affirmation, where we take a moment to acknowledge what we got out of the time with each other.  One of my clients today said, “I know that you believe in me and that you think I’m awesome.”

She’s so right. I do.  I think she’s amazing.

It means so much, when you are dealing with a health condition, that someone not only believe you, but that they believe in you.

Because when you believe in someone you are sending these palpable messages to them all the time that say,

“You are more than this diagnosis.”

“You are healthy in so many ways, even in the middle of this unhealthy.”

“You are capable of health and happiness.”

“You are strong.”

When you say, I believe in you, it’s like you’re telling that person, “You’re not less because you have a health condition.  I believe this is challenging and I also believe that you are so much more than this.  This is what you’re going through, this is not who you are.”

When you say, “I believe you” you are telling someone

“I believe you are dealing with this.”

And when you say, “I believe in you.”

You are saying,

“I believe you are more than this circumstance.”

So, I could write a million more words on this because many of us have had encounters that could make our hair curl with how people who are closest to us really missed being there for us.

But if you are someone who’s dealing with not only a diagnosis but a butt-load of symptoms that can be mislabeled as ‘lazy’ or ‘absent-minded’ or ‘irresponsible’ or ‘self-centered’, I want you to remember this:

YOU are the one who is designed to be the greatest believer in your life.

When you can say, “I believe you” and “I believe in you.”  To that person you see in the mirror each day and go to bed with each night, then, you will have taken your power out of the hands of someone else to validate what you’re going through and who you are

And you will be placing it back into your hands

And your mind

And your heart.

Your journey is to return to the Divine power that you were given

To love yourself

First

And most.

You were the one who was given the Divine power to say,

“I believe.”

 

 

13 comments
  • Danielle April 2, 2014 at 1:34 am

    Gold Stacey!!
    You have nailed it yet again 🙂

    xoxox

    • Stacey April 2, 2014 at 7:23 am

      Thank you, Dani! And thank you for sharing this around Australia. You rock! And your healing journey is always inspirational. xo

  • ajoyrenewed April 3, 2014 at 10:22 am

    I really loved this article and it would be great to share. Unfortunately with the profound language in it, I can’t pass it on. Thanks for a meaningful reality for those of us battling these illnesses. Maybe next time, you will make two writings , one with your own expressions and one that can be shared in the places where those words are not acceptable. Thanks.

    • Stacey April 5, 2014 at 6:59 am

      Thanks for letting me know that this touched you, ajoyrenewed. I’m so glad.

      I go back and forth with the swear words thing — I went from not swearing, to swearing and I’ll likely cycle back some time to not swearing again.

      In the meantime, these are the real thoughts and feelings that wave through me. Even the most pure-minded folks have let me know, their mind goes to those ‘ eff .you’ places too and they feel relief hearing someone else share those inner thoughts.

      Here’s a thought, if you did want to share with your friends, “Hey! I love this content, didn’t love the language. I know you’re grown ups and you’ll be able to pick out the best from the rest.” Or something like that.

      In the meantime, thank you for your suggestion, I’m mulling it over…

  • Chris Jones April 4, 2014 at 5:06 pm

    This is refreshing. I’m a husband of a lovely lady that suffers from Stage Four Adrenal Failure (Non-classic Addisons). And I hate it when people patronize my wife with “must be so hard on your husband”. But the worst is when the dearest of my wife’s family have said “we don’t believe you are ill, you’re just manipulating your husband.”
    Just today in the train, my wife was sitting in the crowded car we were in. Unfortunately I overheard the hushed tones of some women, “OMG I can’t believe she can just sit there so young, whilst we have to stand.” “I’m so happy you said what I was thinking. She should give it up to someone older. Disgusting.” I wanted to choke those women. My wife can barely walk a quarter mile before being dizzy, nauseous and out of breath. For a 25 year old lady who was once a professional ballerina, is life destroying. She just needs people who matter to her, to believe. Not to have a doctor’s note tapped to get forehead all the time. Thank you Stacey for this wonderful post. Truly encouraging. You had my lovely lady in tears. I’m all out. I just want to choke the heartless and inconsiderate people for her.

    • Stacey April 5, 2014 at 7:02 am

      Chris,
      Thanks for sharing from a husband’s point of view. So many people going through this have partners who don’t understand and lack compassion. It’s the worst feeling to not be believed by your parents, siblings or significant other.

      Thank you for standing for your ‘lovely lady’ — it makes the people who read what you wrote feel a little safer and more hopeful that people like you are on the earth.

      Love to your girl. She’s a precious one.

      – Stacey

  • Val Van Hhomissen April 5, 2014 at 7:58 pm

    A good friend sent me this site. I was blown away by how inspiring the thoughts/writings are from this lady. So many people have to see an actual disease to believe it really exists! The small phrase “I believe” means more than words can say for those who suffer with ailments that restrict their daily life and who struggle to find the energy just to get out of bed!!! Thank you and God Bless!

    • Stacey April 6, 2014 at 12:01 pm

      Val,

      Yes.

      So. Very. Yes.

      When someone says, “I believe.” it is a huge deal in the relationship with them.
      When we say, “I believe” to ourselves, it’s a huge deal in the relationship with us.

      small words. big deal.

      i’m right there with you.

      xo,
      Stacey

  • LAA Spikes April 6, 2014 at 10:57 am

    There is a scene in Firefly (Nathan Fillian and Ron Glass) where one character tells the other “what makes u think I mean god Just believe in something”. I have “Believe” signs and rocks every where. Thank you for writing this. I am in the process of sending it to all I care about so it can be said I explained what is going on with me.

    • Stacey April 6, 2014 at 11:57 am

      LAA,

      Love that. Thank you for sharing that scene from Firefly and your take on it. I, too, resonate with the whole idea of Believe as a way of being. It’s a willingness in our heart.

      I have it on my window sill in my bedroom. That word. “Believe.”

      And thanks for sharing this post with others. There are millions of folks who suffer with feeling alone in their invisible dis-eases. Thank you for spreading some comfort and understanding to the people in your reach.

      xo,
      Stacey

  • Rock April 14, 2014 at 8:31 am

    Great job Stacey. Love this!

  • Cory Haas May 21, 2016 at 6:41 pm

    I am dealing with hashi’s, or better said trying to deal. Today is not a good day. I feel stuck and lost in my own bad dream. I miss me, my husband and my life.

    I don’t give up, but it’s hard.

  • Cory Haas October 23, 2018 at 8:46 pm

    Reading through this again, and then seeing my own comment at the bottom, wow! I have come a long way! I love your blogs. So inspiring to us all.

    This is life, we get what we put in. Safe spaces is what we all need and you’ve helped to provide that. You are a blessing.

Leave a Reply