When you're mad at your body and "over" your autoimmune disease

Anger. Disappointment. Embarrasment. Frustration. Overwhelm. Sadness. Anxiety. Fear. Panic. Loneliness. Exhaustion. Defeat.

These are some of the many feelings I've had around my body since I was diagnosed with an autoimmune disease at age 14. 

Because it can be really hard to live with a body that's playing its own game under its own rules. It's hard to feel like you can't trust yourself. Like you never know when the pain will set in or if you won't be able to get out of bed in the morning.

And it's not just the body that goes rogue, right? All of a sudden life starts spilling over from all sides, too.

The appointments with words you can't pronounce or understand.
The tests that feel invasive and tiring.
The insurance companies you call over and over again.
The missed events, changing plans, and uncertain future.

It's a lot to be diagnosed with an autoimmune disease or chronic illness. And you know what? It's normal for that "lot" to start impacting how we feel.

I was diagnosed at a young age so I don't remember everything about the months and years that followed. I mean, I remember the big stuff, the meanings I made of the events, and all the people who were there to help me through.

But I don't remember every conversation, every tantrum, or every good OR bad day. I mostly remember the stuff that I figured wasn't supposed to happen.

I remember being asked to bring a check for $10,000 if I wanted treatment (the next day). I remember throwing an (epic) tantrum on the floor when my brother came in with a verse from the Bible: 1 Corinthians 10:13. I remember cancelling plans *on* a friend's birthday because I wasn't actually in remission and really needed medication.

And I remember sitting on my bed late at night telling my husband I wouldn't fight if another test came back wrong.

I had my phone in hand as my husband walked past the bed and into the bathroom. I was checking Google for the 100th time to compare a bodily symptom I had noticed with dozens of potential causes. 

I was convinced that I was sick again. And I didn't have anything left. 

I mean, I didn't have ANYTHING left.

I felt an overwhelming sense of panic. But not that hyper panic you feel when your brain is still trying to figure out how to combat whatever situation you're in and find safety. I was feeling defeated panic.

I. just. can't. do it anymore.
I can't go through any more tests.
I can't go to any more doctor appointments.
I can't call any more insurance companies.
I can't research any more treatments.

But most of all?

I. just. can't. keep trying to feel better. 
I can't keep holding the faith for what I so badly want: health.
I can't keep trying new products or programs or diets or techniques.
I can't keep hoping the next thing will be "the thing".
I can't keep picking myself up off the floor.
I can't carry on for another day as the "warrior".
I can't keep trying and trying and trying and yet ALWAYS coming up short. 

And so, I told my husband I was done. 

I told him that I wouldn't fight if this next test result came back wrong. I told him I wouldn't do any more treatment. I told him I wouldn't spend any more time in a doctor's office or on the phone with providers.

And you know what? I meant it. 

In that moment, I meant every single word I uttered. I had nothing left. In that moment, I was okay with living less years if it meant actually getting to LIVE those years. 

But even though I meant these words, I didn't necessarily want to be taken literally. I wanted to be wrapped in a giant oversized hug and have my husband tell me he understands. That he wouldn't want to do it either. That he too wouldn't have the energy to keep fighting. That he would also be so over and so tired and so done with this hand he'd been dealt. 

I didn't want to hear that I was a warrior.
I didn't want to be convinced to keep going.
I didn't want anyone to take my words for the surface level meaning they had.

I didn't want him to hear --> I'm not going to fight. I wanted him to hear --> I have nothing left to give. Please tell me it's okay to stop playing this game.

I wanted an out. I wanted to know that I could say 'no'. I wanted to be allowed to  choose a different life. I wanted to be able to live a different reality. I wanted to experience the world in a different way.

All in all, I guess I just wanted a choice.

Because in that moment, I felt like I didn't have one. I felt like this was my past, my present, and my future. That "being sick" was the only way it would be for me. (Forever.) That it was the life I was given to live out.

I felt like nothing could ever be different and that no matter what I did I would always come up short. So, I wanted to know I could do something, ANYTHING, to change my situation. 

But while I can look back now and see what I was really trying to say that night, in the moment I didn't exactly use my best words. Meaning, when my husband responded with a little bit of fear of his own and told me how I strong I was or how I would have to fight and that I couldn't give up? Well, I shut down. I pulled the blankets over my head, threw my phone across the room, and not-so-kindly asked him to leave me alone. 

In retrospect, I was fortunate to have this experience when I did because I was 10+ years past my diagnosis. So that, I had grabbed a lot of tools to put into my "patient" toolbox. Which meant, as subconscious as the part may have been, there WAS a part of me who knew this moment would pass. Who knew these feelings, as strong and overwhelming and defeating as they felt, were temporary. 

While that knowing didn't make my feelings any less real, it did help me move through them. I knew to honor them, to let them speak, to process them. They weren't to be acted upon, but they were to be heard and felt and opened up for consideration.

Because I knew that what I was feeling was grief and that grief is very, very normal along the autoimmune journey. Even 10+ after a diagnosis. I knew that we don't only experience grief -- or frustration, or anger, or resentment -- early on in the journey but that we can experience pain like this at ANY point along the way.​

Whether its sadness, disappointment, frustration, anger, isolation, loneliness, desperation, denial, rage, or {insert whatever you're feeling here}... grief is also what it is. 

And you know what?

It's expected and understandable and a totally and completely okay part of the process. In fact, as therapist (and friend of mine) Jenna Teague once shared with me, "Grief is an invitation to heal. On the other side of that grief is freedom... or at least the possibility for it."

I think sometimes we forget that autoimmune disease and chronic illness come with their own stages of grief. So that, like traditional grief, we’ve experienced a loss that is profound.

Loss of identity.
Loss of future plans.
Loss of functionality.

And just as the grief experienced from the loss of a loved one can impact our physical well-being, so can the grief that comes from a diagnosis. And that very same grief can impact the effectiveness of the actions we are trying to take.

In other words... before we fight, we have to feel. 

We can't bypass the grief. There's no skip card. Because if we don't move through whatever it is that we're feeling -- if we don't address and acknowledge and safely process our emotions -- we can literally hold ourselves back.

I know you might be thinking, "Well, Kel. This isn't grief because I was diagnosed years ago." Or, "That's cool, Kel, but this isn't grief because I haven't been diagnosed or because my loss isn't that big or because other people have it much, much worse than I do."

And I totally hear you. But also? It's still probably grief. 

Healing really isn't linear. And grief really isn't exclusive. 

Maybe you're experiencing grief because you've explored all your options and didn't get better in the way you thought you would.

Wait, I did all this work for NOTHING? 
This is actually my new life now?
There is no way!

Or maybe a different event or loss in your life has resurfaced feelings that were never previously processed. Perhaps you've recently received a test result or unexpected news or are just frankly tired of the fight.

No one else understands.
No one else really gets it.
Nothing is ever going to be different.
I can't do this anymore.

Whatever it is that you're feeling, know this: It's okay to feel the big things.

Maybe you grab your favorite blanket, head to a closet, slide against the door all the way to the floor, and feel every single thing that's coming up for you. Maybe you reach out to a trusted friend and ask for a moment to speak... without a response and without any advice in return. Maybe you meditate or speak to a therapist or do what I do to move through overwhelming exhaustion.

No matter what, know that you don't have to keep walking alone and that many others have walked this same path, too.

While sometimes it seems easier to put away the hard stuff... to take the "ugly" things and shove them into the very back of the closet where we hope they stay out of sight and out of mind... without feeling the full range our emotions we can't... well... feel the full range of our emotions.

Meaning, we can't feel all the good, beautiful, JOY that can come from this journey if we're not also willing to feel the hard, difficult, pain. 

Here are a few resources to support you further:
The stages of autoimmunity
Adjusting to illness w/ therapist Jenna Teague
You've been diagnosed with an autoimmune disease... now what?
Grief and autoimmune disease on the Phoenix Helix Podcast

If you'd like to hear more from Jenna about adjusting to illness, grab a Wellness Boulevard membership. It's also the best place to be if you're looking for more community and the opportunity to connect with others who understand.