Office workplace with book, crumpled paper, pen, on grey desk

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

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“What do you do?” A simple question that I find extremely complicated to answer these days. I can tell you what I have done: traveled by raft down wilderness rivers, rock climbed, backpacked through the Rockies, and mountain biked down ski slopes. I can explain my undergraduate and my master’s degrees, tell you about traveling to all 50 states and 21 countries. If you want to know about my career, I can tell you I was a naturalist, a rainforest ecologist, a paleontologist and a science teacher.

It doesn’t take long for the listener to notice that the verbs and titles I use are all in past tense. Why? What I do in the present tense makes a poor conversation starter, especially if you don’t know what I was. Right now, what I do is take care of my body, manage my health well enough to lovingly care for and nurture my two 9-year-old sons. I’m learning to care for my body as if it is my third child that must get to bed on time or she will fall asleep at the restaurant, or be unable to walk to the car from the furthest corner of the zoo if I ignore when she cries “My feet hurt, can we please stop walking!” I take my body to the pool to ensure it gets exercise to preserve my strength and range of motion of body parts. Also, a great deal of my time is spent preparing nutritious food I can tolerate, that don’t exacerbate inflammation, and that taste great, since eating is already a chore due to chronic abdominal pain and lack of an appetite. Like feeding a picky toddler, I have to delicately coax myself to get in enough calories to live.  

Why? They are probably wondering why a 38-year-old athletic-looking woman who did so many amazing things spends most of her time taking care of herself as if she is a child? Because starting around the time I was 14, I would find myself using every Ace bandage I could find to wrap my aching legs and arms, figuring I was sore from track practice. At 15, my mom found me sobbing in my upstairs bedroom with my pants around my ankles before school, unable to bend down and pull them up because the inflammation in my hips was so severe. At 16, I would wake up with fevers of 103 degrees Fahrenheit screaming in hallucinatory agony as my shoulder would be shoved out of its socket, causing the joint to be hot, bruised, useless and excruciating, then the next day completely fine. A few weeks later, the same thing would happen to the other shoulder, then a knee, a wrist, an ankle… 

Finally, two weeks before leaving for college and turning 18, a specialist gave my suffering a name:  rheumatoid arthritis. What I remember was feeling silly for being in so much pain from “arthritis.” I would soon learn to hate that arthritis was part of the name of my disease, because it allowed others to be dismissive of my suffering because they too had arthritis in their thumb, or think I was too young to have arthritis, confusing rheumatoid with osteoarthritis that is caused from aging.  

Over the next 20 years, I grew confident and skilled in my profession as a teacher, I got married, I adopted two sons, and the disease continued its ruthless attacks and destruction of my body. Each additional joint that succumbed to the rheumatoid forced me to make tough choices and sacrifices in order to have any hope of peace between me and my body. Then, it finally happened: I had used every single bargaining tool I was willing to sacrifice and I was still losing the war.

My rheumatologist and I were trying everything possible to slow down my free fall, yet rheumatoid continued to gain new territory despite our efforts. Defeated, I went to my principal and explained that I only knew how to teach 100 percent, but felt like I only had five percent to give, and I needed her to find someone to take care of my students for the rest of the year. The next day I had an appointment with my rheumatologist, who decided I need to be admitted to the hospital, where I spent eight days. It was from my hospital bed that I made the phone call to Social Security and asked to apply for disability. A word, a label, a concept that I had fought against valiantly for more than 20 years.  

I never got to go back in my classroom, and since then I have had to give up most of the verbs associated with who I was. I no longer climb, run, mountain bike, kayak or backpack. I no longer work as a naturalist, paleontologist or science teacher. I also am no longer a wife or a gardener, and I shy away from answering the question “What do you do? “

I am still a teacher, learning to teach through writing, and I am still fascinated by the science all around me. I am still a mother to two amazing sons, a sister, a daughter and a patient. What I do, now, is stay alive by making the maintenance of my body and management of my disease as much of a priority as the care of my sons. What I do is survive first, then find a way to be alive so the world can see that what I am and who am I is not depended on what I can or can no longer do.

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Dear future partner,

We haven’t met yet, or maybe we have and time wasn’t ready. We need to talk. Now. Before I fall in love with you, before you fall in love with me.

Because I don’t want my disease, ankylosing spondylitis, to cause you to leave me.

Too often I see sad posts in online support communities for severe disease groups. Like this one:

“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”

These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.

Hope. Hope that I’ll be one of the fortunate ones; that I’ll beat the odds and my marriage vows won’t turn into, “‘Til disability do we part.”

Fear. Fear that I will not find a partner to embrace me, disease included, for the rest of our lives. Fear that I’ll fall head over heels in love with someone who will look at me one day with eyes that can’t see past my disabilities, and give up on me.

Who will want me when I’ve been dumped? When my health will be worse and my market value has plummeted beyond repair?

Dear future partner,

I will push you away before I allow myself to trust that when you say “in sickness and in health,” you truly mean it. I am filled with self-doubt because I have no way to prove that you won’t leave me. Evidence shows that it is harder to maintain a relationship when one of us is sick with a lifelong disease or disability.

There is also evidence of miraculous love stories of two people overcoming impossible obstacles to be together. These stories deserve every praise that exists — but they are rare.

I want to be rare.

I am not like other people. I know I am amazing in a lot of ways, one being that I am a survivor. While I have no choice but to fight to survive (the essence of which defines my amazingness), it gives me the strength to believe that one day I will find someone who will fiercely and tenderly hold me from day one through infinity.

I’m fiercely independent. I’ve always taken pride in being self sufficient. I am stubborn to a fault. I’ve had to be — it’s a survival mechanism. You will tell me not to do things, but time and time again I will do them anyway, even when I agree with you that I shouldn’t. You will say, “I want to protect and preserve you so I have you for as long as possible.” Thank you for being selfish, in advance, because it could save my life one day — that is, if I listen to you.

But one of the most important things is for me to be selfish, too. While you are thinking I shouldn’t do this thing, I am thinking the reverse. What will life be in five, 10, 30 years if I look back and realize every decision was an effort to protect me from myself? I don’t want to simply survive, I want to live! What will carry me forward if I have taken no risks, if I haven’t pushed beyond the bubble of safety? Caged chickens deserve a glimpse outside their walls even if their legs are too weak to go far.

I’m sorry, partner, that after I do what I shouldn’t and I am in bed crying in pain, I will expect you to hold me. You won’t understand, but you’ll bite your tongue instead of saying, “Tsk, tsk, you should have listened to me.” You’ll let me cry until the neighbors think someone died. You’ll let my snot run all over your chest and you’ll tell me I am beautiful even if my eyes are so puffy I can’t see your face. You won’t understand, but love doesn’t require understanding to be unconditional.

I will need you more than you will be prepared to give. Our relationship will look different than our dreams. It may sometimes seem that you live alone, except then there’s me in the recliner while you wash dishes. You’ll feel more like a nurse or doctor sometimes, giving me shots, bathing me when I can’t do it myself, staying up all night when I’m afraid I will die if you’re not there to monitor me. I’ll often be sad or angry and you’ll have to figure out what to do to make me laugh again.

I will be needy. I won’t want to go to my doctor appointments alone. There will be nights I spend nine hours trying to fall asleep; you’ll wake up for work and I’ll be there looking at you, waiting to be held. When you come home you’ll find me crying on the kitchen floor because I dropped my favorite glass just trying to put it away.

Sex will involve more than making each other feel good. Our intimacy will include stretching my hips after intercourse and holding me when my back spasms. I can still feel really good, but we have to work harder at self-care and be more cautious than perhaps we’d like.

I will push myself to pursue activities with you even when they hurt me. I will encourage you to go for it, even when it is something I can’t do anymore and it hurts to watch from the sidelines. I will participate in your life to a fault and encourage you to go far, hoping that the freedom I give will substitute for the downfalls I can’t control. The reality is that a lot of my decisions will be navigated with a veil of hope covering my fear that you will leave me. I need you to understand this so you can stop me from pushing myself so hard, so you can tell me that you don’t need or want me to be anything more than I am.

All of this and more will overwhelm you. I will watch your poker face evolve over the years as you hide how hard it is to be in your shoes. I’ll see through it every time. I’ll know.

And I’ll wish I could take everything back: my needs, my desires, my sickness, and the fact that I am in love with you. I will feel I am ruining your life. I will feel I am burdening you with more than you can handle. Don’t let me. Please, tell me how much of a burden I am not. I will need your help reminding me that relationships aren’t about who gives more, but about why and how we give to each other.

Dear future partner,

The reason my disease is good for us is that it will force us to have a deeper relationship. We will have to communicate better to keep our relationship healthy — because of me. I’ll take credit for our need to be relationship perfectionists; I need to be able to take credit for something.

If you become my forever partner, it means I have no doubt whatsoever in your love for me. It means I can be all the parts of me with you all the time — the good, sad, goofy, angry, and painful parts — all of them. It means I have realized I am worthy of the fullness of life-giving love that makes a relationship whole.

Those of us who struggle the most know how much there is to lose, so we do a good job of holding on to what we have. We make the best partners, if only for that reason. When I allow myself to fall in love with you, I will be facing my biggest fear that you’ll get tired of taking care of me and realize you could have a better, more active, more fulfilling life without me. I only hope I am able to show you how much I love and appreciate you so you won’t forget how little I take you for granted.

Dearest future love of mine, don’t leave before we even begin. I have great things to offer despite this disease that tries to take my identity away, this disease that tries so hard to come between us. Help me defeat at least a small part of my handicap — my fear — by proving love can exist and survive beyond all that threatens to undo us. Find me, love me, be with me — until death parts us.

Follow this journey on Being Charis.

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As it gets closer to the time when you will make your appearance in the world, there are some things I would like you to know.

I want you to know what a miracle you are. The doctors keep telling me that you should be impossible. That the chemo and meds should have left me infertile. That once my autoimmunity began to rise, we were told we would lose you. I want you to know that even though your dad and I had to have a difficult conversation around medical termination, we decided to fight for you for as long as you fought for yourself. We placed our trust in you rather than the doctors.

I want you to know how beautiful it has been to see you on every scan, to hear your heartbeat and to feel you kick and grow. I hope you never have to understand how frightening it has been. How difficult it was when they couldn’t see your left foot on a 12-week scan, and I spent the night looking at pictures of child prostheses and tried to prepare myself. Or what it felt like to be told far too often to anticipate your loss or to accept you would probably be born severely disabled.

I want you to know I cried during the 20-week scan and your dad nearly passed out. Not because any of the dire predictions made about you were true, but because you proved absolutely how right we were to fight for you. 

I hope you understand the decision I had to make to restart medication that would leave me unable to breastfeed you. I would happily take any pain or damage my body in order to keep you safe, but ultimately, my body began to turn against you and put my health at serious risk. The best chance for both of us to survive was to take the meds. I want you to know how sorry I am that my autoimmunity had to affect you even before you are born.

I want you to know I will do what I can to protect you from the realities of my rheumatoid arthritis (RA). However, I know I can’t fully protect you. You’ll see your mom in pain and I hate that. I’m frightened it will make it hard for me to hold you or to run around with you as you grow. I dread someone will ask what’s wrong with your mom. I do believe you’ll grow up with an extra level of tolerance and compassion because of what you will witness. I know you’ll have a great role model for coping with adversity, and that is one of the few gifts my health issues can give you.

I want you to know you’re so completely loved even before you’re born. I want you to know how proud I am of your fighting spirit. I promise I will always love you and fight for you my son.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images


The hardest thing I’ve had to deal with is the judgment and expectation of others. My journey started when I was 17 years old and I was not diagnosed with fibromyalgia until I was 21. Those four years were torture. I had no control over my body. It was as though I was trapped in my own personal hell. I don’t remember much about other people during that time as I was consumed by my pain, loss of cognitive function and sleep deprivation, but I do remember feeling very much alone. The loneliness never really subsides because people can never truly understand something they have not gone through themselves. That lack of understanding is where I believe the unrealistic expectations and judgments come from.

Living with fibromyalgia for almost 10 years has taught me that people get over your illness fairly quick and expect you to as well. Statements such as:

“Why do you sleep so much?”

“You should really get out more.”

“You just need to push yourself.”

“Maybe XYZ is why you are tired all the time.”

“I’m exhausted, too. You just need to push through it.”

“You are so lazy.”

“You need to do XYZ.”

These statements may seem acceptable on the surface, but when they are repeated over and over again it becomes tiresome, especially when paired with these responses:

“I don’t know, I am always exhausted and it hurts more when I don’t sleep.”

“Going out gives me anxiety and requires a lot of energy. I’d rather just relax and stay healthy.”

“Pushing myself is the exact opposite of what I should do. If I push myself then I either get a flare-up or make one worse.”

“The reason I’m tired is because I have fibromyalgia. I don’t sleep properly and start out with less energy than a healthy person.”

“Maybe you should relax and get some rest if you are exhausted. I have fatigue which means my exhaustion never goes away, I am just less exhausted at certain points.”

The “you are so lazy” comment really doesn’t have a comeback that doesn’t result in anger. Why? That’s because we may already think we are lazy and weak. We may wonder if we weren’t so weak or lazy would we be able to do what is expected of us?

You are not lazy. You are not weak. Living with a chronic illness is not a simple feat. Not letting the chronic illness consume you is a monumental achievement. Every single one of us has almost felt defeated, but we find that inner strength to pick ourselves back up and find a way every single day.

When you get told over and over again that you need to do something, “I can’t” just doesn’t seem to cut it after a while. What the “healthy” people don’t seem to understand is that I don’t not want to do things. I fear not being able to do them and becoming a failure. I fear being able to do them because I have pushed myself too hard, which results in more pain. I know my limits but people test them over and over again, and that disappointment is what drives me to push ourselves farther than we should.

This is in no way meant to bash the “healthy” people, because it is hard to understand chronic illness even if you are living in it. It just weighs heavily on my thoughts that I am constantly disappointing those around me no matter how hard I try.

To people that are suffering from a chronic illness: It’s OK. You don’t have to meet everyone’s expectations. You should set your own expectations for yourself, because only you know your limits and what you are capable of. There are people who will always judge you, and that is a reflection of who they are as a person, not you. I believe that since we have become ill, we may struggle to get back to the person we once were and that includes our relationships. We have to face the fact that we are no longer the same person. We have grown into someone much stronger. If we have changed, how could we expect the relationships to stay the same? It’s OK — I believe every person has been put into your life for a reason. Some people don’t always stay, and that’s part of life.

jennifer kuettner post
Jennifer (right) and two friends.

Cherish the memories you have and know that every experience that you face helps define you as a person. The chronic illness has changed you, but it is not the only thing that defines you.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

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I just had surgery on my wrist and thumb last week. Much to my surprise, this surgery has been the most painful one I’ve ever been through. I’ve had hip replacements, knee replacements and my feet reconstructed multiple times. I’m not sure why this one was so painful other than maybe because you have more nerves in your hands and fingers than the larger joints — at least that’s my take on it.

x ray of broken fingers

I’m fairly good with narcotic medication. When I say “good,” I mean responsible. I don’t know if it’s because I’m just used to being in pain from the rheumatoid or if I just have a different chemical makeup than others.

I have a friend who has chronic pain like myself, and when you find someone who knows what you’re going through it is the greatest gift. To have someone by your side or at least a phone call away who just gets it is so validating. They understand everything that comes with the chronic pain… the fatigue, the nagging stress, the moments of strong will and the moments you feel you just can’t handle it anymore. They understand those moments of sheer hysteria.

Her husband recently went to the doctor for his severe back pain. For years he just dealt with it and refused any narcotic medication the doctor had prescribed. But the pain got to be too much for him, and he promptly went and had the prescription filled, got home and took his first pill. While sitting there he asked his wife when the high would kick in… she sat there laughing a little and asked if he was in any pain. He said no and she calmly said, “Well honey that is your high… you’re pain free.”

I think that’s one thing people with out chronic pain don’t understand. The outward perception of someone on narcotics is that we’re just walking around high as a kite when in fact it’s the only thing that helps us lead a semi-normal life. It’s what helps take just enough pain away so we can dress ourselves in the morning and get a shower after a long day.

Yesterday I had decided the pain medication was starting to become almost an inconvenience for me. It had been almost a week, and although I was still in pain it wasn’t as bad as the previous couple days. All I had been doing was sleeping. The medication was starting to knock me out. I wasn’t able to get anything done. So I took it upon myself to stretch it. I wanted to see how long I could go without any pain medication. I wanted to see how much pain I was truly in. I wanted to see if I even needed half of the narcotic I was taking. I felt comfortable doing this considering the previous day the pain was fairly under control.

For some reason I was able to really pay attention to how my body reacted to this. I was extremely surprised by how different those two hours made me feel. At first I was fine, but then I noticed a slight headache, I felt foggy headed and felt somewhat agitated. This was weird; it had never happened or at least I’d never noticed it before. All of a sudden I was more pissed off at the smallest things than I ever would have thought. Pissed off? Yeah pissed off, and I had no idea why. I kept thinking, “What the hell is my problem?” I felt slightly nauseated and just not myself.

A bunch of thoughts started running through my head. Is this what withdrawal was like or was I in more pain and trying to subconsciously deal with it? After 24–48 hours I finally decided I had tried to do this way too soon. The pain had gotten out of control and was more than I could take. All I wanted was to just fall asleep so it would stop. I took my medications and finally fell asleep. That’s all I wanted was to knock myself out. That might sound bad to some, but for someone with chronic pain, you know exactly how I felt.

It has always been in my nature to push myself. I have determination. I have strength. I have that relentless need to be more than I am. I admit sometimes I push the envelope too far and it ends up backfiring. Well, 90 percent of the time I push too hard and it ends up backfiring, but if I didn’t, would I be where I am now? That 10 percent of every time I pushed, it’s got me to where I am. Right?

You would think after 19 years of battling rheumatoid arthritis and 10 years of battling lupus that I would have shit down by now. That’s one thing about a chronic illness; it will always, always keep you on your toes. Just when you think you know the ropes, you think you have it all figured out, that you know your limits… it will be there to slap you in the face and remind you that you don’t know shit. The sheer unpredictability of a chronic illness is what makes life hard, is what makes life interesting, and it’s what makes life… life.

In a quick summary though, I would suggest not to try to think you are She-Ra or tough, or that you think it will be OK when messing with pain and pain medication. Take what your doc gives you and how much and how frequent. Pain medication is given so your body has an easier time healing. Take that shit seriously.

Editor’s note: This is based off an individual’s experience and should not be taken as medical advice. Please see a doctor before starting or stopping medication.

This post first appeared on Medium.

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