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What My Peers Don't Understand About Autoimmune Hepatitis

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While struggling with a rare, chronic disease at the ripe age of 17 may seem exciting from an outsider’s point of view (I mean, I get it – days off school, coming to class late, extensions on work, an excuse for when I don’t do my homework and just the sympathy in general), I can assure you from an insider’s point of view it’s one of the most twisted realities you can face at this age, or any age for that matter. So as my peers continue to roll their eyes when I walk into class late, they still fail to understand what goes on behind closed doors. And that is too much to articulate in one sitting.

It’s hard to grasp the concept that this isn’t an illness I can just shake, that it won’t go away in a few weeks, not even in a few years. The evil truth is that I will be sick for potentially the rest of my life.

While this is all hard to grasp, what’s even harder to grasp is that the medications I must take to stay functioning have more symptoms and side effects than the disease itself. A cruel mix of making yourself more sick with immunosuppressants and steroids to stop your own body from attacking itself. Autoimmune hepatitis could be genetic or environmentally triggered, but it is not my fault, so please don’t stare when I say the word “hepatitis.” It just means inflamed liver; I’m not contagious. Please don’t stare when my cheeks look puffy from the steroids I take to stay alive. Please don’t stare when I’m exhausted from walking up the stairs. Please don’t stare at my bruised body. Please don’t stare at the growing hair on my face and the loss of hair from my ponytail. Please don’t tell me to suck it up. Please don’t tell me I’m over-exaggerating the symptoms. Please don’t tell me to stop complaining. Please don’t tell me you know how I feel. Because you don’t. Unless you are struggling with a chronic illness, you truly will never know how it feels to ache from head to toe inside and out each day while carrying the weight of your body on your knees, which feel like they will give out with each step you take from the joint pain and fatigue.

As those of us with this disease grow more aware that “normal” is a far-fetched concept from our reality, it never gets easier. When you realize you can’t remember the last time you felt “normal,” your new normal becomes an aching body at the age of 17, and all you can do is watch everyone around you continue to run through their lives with great fear that you may not ever feel normal or healthy again.

None of this ever feels real until it hits you like a ton of bricks at the worst times, like when you are trying to keep up with your social life and you just can’t go out anymore or while you stand in the shower quietly sobbing, wishing you never took good health for granted.

But we mustn’t sit around and feel sorry for ourselves. We don’t look sick, so we should stop complaining, right? How can this all be fair? The truth is, it isn’t fair and this sucks big time. Unfortunately, most people just won’t understand how serious this really is because we put on a brave front. All I can say is…this isn’t fun or glamorous. It’s a vicious cycle of doctor appointments, medication and hope. Hope for a better, healthier future. But we must continue to push through the hard days with positivity and strive to live a somewhat normal life; after all, is there really such a thing as normal? We are all unique in our own way.

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What You Don't Realize When I Refuse to Have a Drink With Dinner

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No, I’m not an alcoholic. I have autoimmune hepatitis. Please don’t get offended when I refuse to have wine or beer at dinner. Forgive me for canceling our plans. I’m exhausted 24/7 and constantly struggling to maintain my health. My condition is genetic or environmental, but the doctor’s don’t have a clear or concise answer. I have been living with this disease for six years now, and there is no cure. I will not allow myself to become victim and don’t mean to complain, but please understand, we struggle with the simplest problems every single day.

Today a friend of mine asked me if I recently got my wisdom teeth removed. Great. I knew people were starting to notice. This is proof. “Why does your face look like when you get your wisdom teeth taken out?” Puffy and swollen. This is just moon face, a side effect of prednisone.

Pardon me, as I fiercely itch my legs in public. Yeah, I should know better than to wear leggings or fitted jeans because it makes me utterly uncomfortable. How can I look presentable for society when my entire body is aching?

Rule of thumb is to drink eight glasses of water a day. I would but after two sips I feel like I have a UTI. The urge to go never subsides, so don’t ask me why I get up three times in a row before bed just in case.

These are just the everyday problems of a person with  autoimmune hepatitis. Long term, there are a lot more problems like side effects of medication, concerns regarding pregnancy, and many more life-altering issues, so please stop asking me, “How does it feel not being able to drink?”

Follow this journey on JasmineKaurMann.com.

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I Have a Rare Disease, but That Doesn’t Mean I’m Alone

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It just occurred to me that I have a rare disease. 

I guess it would be more accurate to say that the weight of having a rare disease just hit me. It landed on me like a bucket of green slime from Nickelodeon in the 1990s, with potentially a crowd full of people pointing at me saying “Ew!” I feel heavy, awkward and alone. Maybe that’s why I never let myself feel this way before. There is incredible impact as I accept that I do not have anyone else to share my experience with who actually gets it in their own body. 

Whew. Deep breath.

I was fortunate to give an Ignite! talk at Medicine X at Stanford in September. One of the ePatients there asked to interview me for a storytelling and podcast project she was working on about people with rare disease. I hesitated and said, “I’m not sure how much I know about this topic.” I hadn’t thought about it much. As she asked me questions one by one, it began to sink in. Tightness in my throat. Difficulty breathing. Confusion on my face. All of a sudden this thought bubble passed over my head: Whoa, I actually have a rare disease.

For the first time I started thinking back at my illness experience, and it was like all the puzzle pieces started to fit together.

• Hanging out with pregnant women at parties because they weren’t drinking either … not my group, but as close as I can get to community in this situation.

• Getting glasses of champagne at weddings, and pretending to toast while inside feeling sorry for myself … no one else was struggling like this right?

• Joining a yoga for cancer survivors class … I didn’t have cancer, but at least they included me so I would have someplace to go that was physically at my level and supportive of working through illness. Otherwise, I’d be on my own.

• Being told by a nurse at my liver biopsy that I probably had hepatitis C because she could see I had a tattoo, and people get hepatitis C from dirty needles used in tattooing. I don’t have hepatitis C, but at least those are other people that know what liver disease is like. 

• Watching people hemorrhage from ruptured esophageal varcies while I worked in hospice as a counselor, wondering if I would die like that. I realized there was no one else I knew at age 30 who was thinking about this that I could talk to. 

A series of loss. Of not being seen. Of people not getting it. Of being understood for little parts of my experience, but not all.

I come back to the present moment … she’s saying “some people with rare disease say they feel special.”

Special.

I love being special. My family has always told me I’m special, which has its pros and its expectations both. I do not want to be special right now. I yearn to have someone get my experience. To say “me too” and honestly understand what it’s like to have autoimmune hepatitis.

I remember my liver specialist saying to me it’s not good to be interesting to a physician. And that I was very interesting.

Special. Interesting. Translation: alone.

My new awareness of rare disease began in September, and it’s taken me until now to write about it. In fact, I had stopped blogging all together after the first tidal wave hit. But now I think, maybe other people feel the same way.

Sometimes we accept our diseases in layers, so that we can tolerate the gravity without imploding. So that we can survive. And then we grow and learn with our bodies for the rest of our lives.

Hmm, I guess I do have a rare disease. I guess this is what it feels like to have one. And I guess that the rare disease community is my community. A group of medical misfits. Each one alone in our experience. And by being alone, that means we have each other. What a paradox. By not fitting in, I fit in. 

Relief. Through my realization of having a rare disease, I can now seek out other people with rare disease who get my experience. Not of autoimmune hepatitis, but of what I wrote above. Of feeling like the only one. Together a bunch of us who feel like we have no one have a community of each other.

Special. Interesting. New translation: community.      

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Lead photo source: Thinkstock Images

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My Reflections After a Bone Marrow Biopsy

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I already have a diagnosis of autoimmune hepatitis, but in conjunction I have had (from the beginning) pancytopenia, or low blood count of cells. After a recent liver biopsy, the good news was that my liver damage has not increased, however that left the continued question of what is going on with my blood count if it’s not related to my liver. There is so much conflict in our process of being medical anomalies. I was told by one of my specialist that it is never good to be “interesting” to a doctor, and I, unfortunately have proven to be quite interesting.

Every piece of good news saying I do not have an additional diagnosis immediately leads to an additional question of what, then, can describe my numbers. What’s actually going on in the data? Results are helpful and meaningless all at the same time. Sometimes we defy labels. Rare disease leaves us unlabeled.

I was told a bone marrow biopsy would be suggested, to see if “something else was going on.” I wrote this piece in response to this recent procedure. I feel better than I have in years, yet my numbers said I needed another biopsy. It is confusing to know where the truth lives, in my experience or in a diagnostic report. There are many versions of pain and relief.

Noun.

Marrow.

The fatty network of connective tissue that fills the cavities of bones.

Marrow.

The most essential or most vital part of some idea or experience.

Bone marrow biopsy
Bore out my vitality in a thread
Cherry red on the petri dish
The pain is excruciating
I don’t want you to see my most essential part
Taking a microscope to look at my essence

One more “first”
Anticipation of pain
A needle to my center
Owwww!
Sucks the heart
Leaves an absence
Deep aching left in the wake

It is a violation.
Perhaps the cavities of my bones will reveal
my pith to be altered
Maybe you will see
That I’m not at my core who you think I am
All pretenses and projections will be blown

The truth will be revealed
Perhaps it will be a relief, I don’t have to act any longer
You’ll see I’m broken, less-than, deformed, mutated, or otherwise not normal
And I’ll have to stop pretending.
Perhaps it will be my next greatest challenge, and I’ll have to show up even more
You’ll see I’m clear, resilient, scaffolded, filled with super-cells ready for action
And I’ll have to stop pretending.

Relief has many forms.
The line between positive and negative degrades to truth
This is more complex than results on paper
Because it is comprised of experience

The results will mean nothing and everything
They tell me and everyone else who I am
Yet say nothing about my hopes, desires and capacity to love.
A life lived anchored in marrow.

I often wonder if I am strong enough for what I want to accomplish in this life.

And now some of that strength will be removed
And then it will grow back fiercer
With renewed vigor
Intensely recommitted to being vital
To living out it’s impact and purpose
Perhaps I should say thank you
Thank you for removing a burdened cross-section
So that resolved vitality can replace it

With one more part of me removed… who am I now?

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Why I Want to 'Be Seen' for the Challenges I Face With Illness

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Today I want to celebrate. And the truth is, I’m too exhausted. Too tired to celebrate or feel satisfied.

I have crawled across some make-believe finish line of the past month, which has left me tattered and torn, strewn on the ground reaching for a cup of water.

In the fantasy of my mind I thought I’d be standing on a podium of my own achievement, medal in hand, adoring crowd, with everyone aware of what I’ve accomplished and done. Oh, doesn’t that feel good? I can feel the perfect beam of sunlight landing on my face now, lighting me up and I’m able to take it all in. (In this scenario I think my skin is even sparkling a bit, like one of those vampires, and also I have a dress made out of fire, like in “Hunger Games.”) So magnificent.

My glory moment of surviving the last month with autoimmune hepatitis.

It’s what I deserve, to be seen.

But unfortunately, there’s no podium, no medal, no crowd.

I feel like I just pulled back the curtain to see the wizard is actually just human. I’m just human. And no one seems to notice. In the scenario of what feels like a reality, I’m standing on 5th avenue in NYC asking for food, and everyone passes me by without looking. Cold, grey, uncaring.

Let me make this clear — this is not the glory moment I wanted. I’ve been trained for awards and applause, sparkles and fire. And instead it feels like I’m getting a broken wizard and grey blah.

In truth, today, my glory moment is unexpectedly quiet. I’m being offered time alone to celebrate, quietly, with myself.

I’m the only one who really knows what I’ve survived this past month.

And I’m the only one who can truly see it.

Sigh.

Two times in the hospital.

Medical bills that make my head spin.

One job I work to have health insurance, which destroys my soul a little each time I go there.

A doctor appointment with great news.

And foreshadowing of more challenging procedures to come.

Three presentations at major conferences, one at a university.

Talking about things I hold so dearly to my heart.

***

More hours spent with my person than I could’ve hoped possible.

Quality time with family and friends.

A brave decision to give myself more space and time by lowering a commitment.

Feeling broken, filled back up, broken, full, broken, full.

The brilliance of a fleeting moment being in the present.

And yet, it’s not enough.

I want more.

I want someone to see me!

Don’t you? I want the crowd!

I want people to really know what I’ve gone through, as if they were somehow me. People who really get it. To tell me they’re proud of me. Oh, I feel how I crave it.

But the truth is, it does not matter who sees me if I can’t see myself.

I’m the only one who will really know what it’s like to be me. If I can’t breathe, take in the joy and the pain of surviving another month in this body, in this lifetime, no one else is going to be able to make me feel that. I get to do this for myself. 

So I accept what is right before me. A day of personal silence and quiet, to tell myself I’ve done so well. To sleep in, meditate, write… do some movement, eat my favorite foods. To tuck in with a cup of tea and say, dear one, I’m so proud of you.

And as I do this, I realize all the people that have actually told me this over the past month. But I couldn’t hear it yet, because I hadn’t told myself. I needed to believe it first. If I didn’t believe in myself first, no one else is going to be able to say it in a way that I could believe it.

We need to see ourselves first before we can take the “good stuff” in from anyone else.

Don’t worry, I totally get it. Seeing ourselves for our accomplishments can be the hardest thing.

So today, would you be willing to try to say: hey self, good job! To see yourself, just about one little thing? I know you did something worth being seen for. Getting out of bed, organizing a closet. Maybe it feels funny, or fake, but I’ll try it with you. We can tell ourselves together, OK?

Because when we see ourselves, we can let in more from everyone else too.

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The Questions My Rare Diagnosis Papers Begged Me to Ask

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I reach into my purse and pull out a piece of paper. It’s a remnant from my doctor’s appointment yesterday, my most recent check-up. White, crisp data. Simple numbers distributed on a page in an orderly fashion. It is so clear to me these numbers and letters don’t possess feelings. My name is at the top, my birthdate and age: 34 years. Thirty-four years. I feel like I’ve lived several lifetimes in these years ­— in the last five alone. It’s dizzying. I notice sorrow creep into my belly. I sigh.

It’s just a piece of inked paper, but for me it is a constellation of cycles of diagnosis and recovery. What’s in a diagnosis? How is a diagnosis acted upon by time, by five years of time?

It’s about to be solstice, the day with the least amount of sunlight, and most darkness. I’ve allowed in both the darkness and the light, because it’s all true. To try to deny any part would be futile. I believe it’s all part of me, stardust, the universe, trying to experience itself in this unique embodied form, in this lifetime, in this human body —this seemingly broken body that I’ve painstakingly put back together again, one tear and laugh at a time. The white paper says: today’s clinical visit summary.

It’s about to be the new year. A new year, as if things change in a day. I guess sometimes they do. On New Years five years ago I was flying to India, intuitively knowing I had to go to shift my life. I was seeking and finding no answers here. So what do privileged people from Boulder do when that happens? Go to India. Go somewhere else to find yourself, to find the part of yourself you already know to be true, but you’re terrified about accepting, so you give yourself a glamorous and culturally-appropriated intervention. Thus, I went to India, because I had an intuitive hit from my future self that I needed help to shift. And I sat in temples and meditated and frivolously stated that I was open to whatever help I would receive. “I’m open.” Just help. Guess I should have been more specific. I started feeling ill two weeks later on the flight home. The white paper says: trip to India is seemingly unrelated.

Now, it’s about to be my birthday — 35. I feel like a crone. I’m not trying to be funny here; archetypically I feel like a crone. Metaphorically, I’ve spent the last five years contracted in winter, and am just now crawling out to feel the rays of sunshine pierce my inner seed. I’ve been under a blanket of snow while my purpose has been working on me. On the outside it looks like I’ve been sparkling, like I’m the model patient, like I’ve triumphed over incredible illness. True. In my past life as an actress I painted on the face; as a patient, I added the smile.

Underneath the surface I went from professional seeker of the silver lining to professional griever. 

I’ve grieved, and grieved, and grieved. I’ve lost, and let go: of my past I didn’t want, of my past I didn’t get, of my future that can’t be my future anymore, of my future that will be, but I’m scared to own. The white paper says: next check-up in three months.

So on this upcoming birthday, as with every birthday, I will have gratitude to be taking another breath, because it is precious. And I will have fear, as with every birthday, of what I will become in this year. Both the potential for another shattering, and the potential for stepping more fully into my expansion. I feel exhausted by the freedom of choice and responsibility that comes with being authentically human. And my specific version of human is to burn brightly, but not burn out, or more accurately, to not burn out again. So what will I become this year as I continue to step into my purpose?

Let’s not forget this piece of paper with scattered data in my hand. This paper tells the tale, of diagnosis, of feeling fragmented, of it not being fair, of slow improvement yet continual destruction over time. It says autoimmune hepatitis, pancytopenia, enlarged spleen. It says to continue Prograf. I feel my doctor’s thoughts pour through the page as he typed the numbers, “You haven’t let your liver disease define you. That’s as rare as your disorder.” There’s the prescription he stapled to the back for a new blood test to see the level of my liver damage. The word “cirrhosis” bleeds from the page and takes flight in the air, and my liver increases its weight in my abdomen.

In the unspoken white of this paper are five years of heartache, pain, not being seen, acceptance, grasping, identity, new identity, discovery, joy. I don’t want to be sick. But I don’t know how to be healthy.

And who am I now? 

Of solstices, New Years and birthdays, of that which dies away and creates new space. Of slowing down, feeling the anxious beating of my heart in my chest at night, because I don’t have time to waste. I could die at any moment. And then there’s another breath. Follow it.

I wonder, how does the seed know about gravity, or how to find the sun, or which way is up? How does it know where to put down roots and where to grow, or where to hold true or expand?

And I wonder, how do I write about this experience, own my experience, and continue to live my experience in a way that can inspire others who are in their own crisis?

I don’t know. I guess I just continue to be.

So I neatly fold the prescription and the piece of paper, and place it delicately in my purse, with reverence, because it holds the last five years of my history. And I find my hand on my heart sensing for my next breath. My cells, my family, my liver, my relationships, the earth beneath my feet, the stars over my head, the seed of my purpose — it all holds my history.

Lead photo source: Thinkstock Images

Follow this journey on Zina Mercil

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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