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My True Answer to 'How Are You, Really?' as Someone With a Chronic Illness

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If I were to meet you, I’d smile.

Maybe you’d ask me how I am. And my smile might wobble a little. It’s not a question I can easily answer. I don’t want to lie, but if I told you the truth of how I am, you might do that little sideways step and make a mental note not to get stuck next to me next time. So instead I’d say, “Fine, thanks. How are you?” and we would talk about that instead.

But since I’m here to share my story, it might be time at last to break out the real answer: “I’m not doing so well.”

My name is Rachel and I have a neurological disorder that causes a dysfunction of the autonomic nervous system, meaning all the functions of the body that are automatic: breathing, heartbeat, blood pressure, temperature regulation, digestion, bladder and bowel functions — just a few of the things that make our bodies efficient places to live.  My body is constantly searching for the healthy level of homeostasis most people enjoy without ever having to think about it. In my body, all of the aspects of the autonomic nervous system are affected. I have a pacemaker to assist my heart and medications to help with the rest. These measures are the ambulance at the bottom of my cliff. But when you look at me, you can’t see how I am falling. They call my illness an “invisible illness.” It isn’t easily apparent. On my worst days, I’m in the emergency department or here in my bed, dealing with all types of broken body problems. I might be tapping away on my keyboard, connecting with the world in the best way I can, out of sight. But on my good days, when I am visible, I might be beside you, chatting about how you are and smiling. Looking fine.

There is no cure for dysautonomia. My doctors haven’t found a cause, but for some, a cause may be found and a treatment begun. For the majority of us, “treatment” means symptom management. A regime of medications and interventions, it is a ride on a runaway roller coaster in an abandoned theme park – frightening, unpredictable and overwhelming. Autonomic dysfunction like mine is more commonly seen in late stage Parkinson’s disease or multiple sclerosis, but without a primary cause it is rare. There are few of us in Australia and New Zealand, but we are resourceful! We have found each other on the Internet and we work together to find information, resources and hope. I cannot imagine how it must have been for people with rare diseases before the Internet. It makes me want to cry imagining how very isolated they must have been. I am so grateful for my finger-tapping friends all over the world. Shouting two-dimensional hellos into the ether. Arms reaching far across the digital divide with comfort and solidarity.

So, how am I? Really?

So frustrated, so scared. See, I have two kids and they are still so little. They are 6 and 9. I linger at bed times, holding them in my arms, always for just a bit longer. My lips against the hair on the tippy top of a warm head, my cheeks pressed up against the moist stamp of little hands. My thoughts, always on what the future may hold for them.  My heart in my mouth and my own hands grasping at the time slipping right through them. I want to be the mum who walks beside her grown kids, head up high, laughing and joking. Not incontinent, spent and struggling to keep pace with the conversation.

I’m heartbroken. See, I have this husband. He’s the best man I have ever met, and I got to marry him. He’s tall and lovely and practical and smart. When we argue, we make up. When we struggle, we push through. When we love — well, there is no song, no poem, no flower that could help you understand. It’s friendship to the power of two. It’s trust in the face of despair. It’s warm and good. It took me so long to find him, and then dysautonomia found me. How is that fair? It breaks my heart he also has to live with my diagnosis. My husband, my friend. A commitment in sickness and in health, but where is the health? I want to be the wife he can run away with, when our child-rearing is done. The wife he can play with — he’ll chase and I’ll run.

I feel lost and empty. See, I had a great career. I was a teacher and I loved it. I worked with kids who had exceptional abilities. And I still think about every child I have ever taught. I still yearn for a classroom of my own and a chance to engage in those exchanges when learning is the light illuminating our world. Where sparks fly and inspirations blaze. Where questions and commentary, connections and community fill me with hope for the future of our world. I miss being their teacher. I miss seeing them shine and watching their possibilities unfold. I want to be the one lighting the bonfire. I have so much tinder for the fire! But now, I just teach myself. Patience. Every day. I grit my teeth and get through the next thing. I swallow my shame about what my body won’t do.

But I’m really glad you asked how I am. Because even though I am all of those things I write about above, I am also amazed and so genuinely gobsmacked by this life. I have lost so many of the things that meant so much to me. I had very specific plans for my life, for all the things I thought I should achieve. But I am finding out something quite extraordinary: I actually have so much. I have everything that matters.

I have love. I have a purpose. I have words (and I intend to use them!). Being sick is not a picnic. But it is a bit of a fast track to finding your true self. And in spite of everything, I am back to the basics of Rach. For the first time in all my years of life, I like me. I have so much more insight and empathy than I could ever have had before. I am writing and connecting. I am meeting “my people” from right where I am. In the comfortable discomfort of the present situation. From my bed. From a place of real, true me. I feel all these sadnesses, all the fear and loss and frustration. But I also feel a peculiar kind of free.

I feel like I have found me. I turn and I smile at you. Because actually, I am fine, thanks.

And truly, how are you?

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10 Animals I Can Relate to Since Being Diagnosed With Dysautonomia

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Brooke Barker over at SadAnimalFacts.com does a fantastic job illustrating animals and some of the struggles they face. As someone with dysautonomia, I can easily relate to them!

1. Arabian Camels  sadanimalfactscamel

Oh boy, can I relate to drinking 30 gallons of water in 15 minutes! Water (in large quantities) is one of the only proven treatments for dysautonomia. When I’m having a particularly bad symptomatic episode, water is usually the first thing I grab.

 

sadanimalfactssparrow

2. Sparrows

Let me just say that with the concoction of medication I am on combined with the random and sudden changes in my autonomic nervous system, I am known to suddenly grow very hungry. While eating small meals is advised, in those moments of sudden, ravenous hunger it can be hard to stop. Also, maybe the sparrow is having a rough day or is particularly emotional. Who are we to judge her? I have had some sparrow-y days in my time for sure.

 

sadanimalfactspanda

3. Giant Pandas

Once we factor in the insomnia or “pain-somnia” from the night before, medications causing drowsiness and the constant fatigue of dysautonomia, it is very easy to see how we can easily feel like a panda.

 

dik-dik 4. Dik-Diks

I completely understand you, Mrs. Dik-Dik. Sometimes I just need a good old-fashioned territory-marking session myself.

 

sadanimalfactspigeon

5. Pigeons  

Of course we can all relate to this. I frequently put off calling the doctor or insurance company to ask a question. I don’t look forward to taking my handful of medications every morning, so I have been known to put that off as well. Working up the energy to shower and get ready is a constant game of “how long can I wait but also make sure I still have time to recover after this shower?”

sadanimalfactsrabbit

 

6. Domesticated Rabbits

Oh man, can I relate to this rabbit with the number of times my husband asks if I’ve taken my pills, taken my blood pressure or brought my portable oxygen with me. My favorite forgetful moment of mine has to be when I was checking in at the hospital for a procedure unrelated to dysautonomia and they asked me a list of questions, such as “Are you a fall risk?” My response to this was, “Of course not!” My husband just tilted his head and looked at me. “You don’t occasionally pass out randomly while standing or walking?” he asked. Oh yeah, that.

ant

 

7.  Ants
I certainly have these days occasionally, and I feel for you, Mr. Ant.

 

 

 

sadanimalfactsoctopus

 

8. Octopus

I definitely feel like an octopus on those sick days when I only go out for coffee creamer or to the pharmacy.

 

 

sadanimalfactscow

 


9. Cows

Stairs are one of my biggest workouts. Going both up and down are hard for me. Could you run down and grab a few things for me?

 

 

10. Seagulls  sadanimalfactsseagull

First of all, don’t you think we should rename “Girls’ Night Out” to a “wreck?” I really think that name is more fitting. But seriously, aren’t we all kind of a wreck just trying to navigate our way through life?

 

Do you relate to any of these animals?

Follow along on Amy’s comical blog, Smiles in the Trials.

 All images are courtesy of Brooke Barker at SadAnimalFacts.com. You can now pre-order Brooke’s new book on Amazon!

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The Advice No One Gave Me on My Diagnosis Day

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I remember my diagnosis day. My doctor gave me a bunch of suggestions about how to handle “episodes” and gave me a prescription for a drug, which quickly turned into about five different prescriptions.

Shortly after realizing the medications weren’t working, people offered up their ideas about what I should do to treat my illness. But the problem is if it worked for one person, it doesn’t mean it will work for another.

Although we appreciate that we’re cared for and that people want to see us get better, it reminds us what we’re fighting is incurable. There is no one-size-fits-all approach. If it’s out there, chances are, we’ve tried it.

Since my diagnosis, I’ve found myself doing some really silly things, hoping and wishing that one day I’ll be cured. It can be incredibly frustrating to hear how one treatment worked for one person, but it doesn’t work for you. You feel like a failure, like you aren’t doing something right, but you’re doing everything you can.

What no one tells you on diagnosis day is that fighting chronic illness is not a sprint. There is no finish line. There is no set number of treatments you must undergo to get to recovery. There is no miracle drug you can take and feel better.

You’re constantly in a battle, fighting a war that’s bigger than you realize. It’s OK to be scared. Some days will be really, really hard. Some days you won’t recognize the body you’re in. Your body will feel inorganic and foreign to you. It won’t cooperate. It doesn’t let you do the things you once loved.

There will be days when you can’t get out of bed because your world is literally spinning. When you can’t even make it to the bathroom or get yourself a glass of water to take your meds.

Here’s the advice I wish someone would have given me on my diagnosis day: Take it one day at a time and …

1. Rest

Sleep and rest. This is the one thing that took the longest for me to do. For so long, “resting” was just a waste of time. What was the point of this life if not to get out? What I’ve learned is that resting is letting myself live. It lets me live for the days I can do things. It lets me live for the days when my illness doesn’t win and I can throw a few extra punches in on it.

2. Relax

The old saying “Rome wasn’t built in a day” can ring true for chronic illness warriors everywhere. Just because the day doesn’t go the way you want doesn’t mean the day was a waste. No day is ever a waste. Take everything in stride. I like to sing “Let It Be” to myself on bad days because sometimes that’s all you can do. You can’t change it. Worrying or stressing won’t make it any better. In fact, it’ll make it worse. So kick up your feet and try to relax and breathe.

3. Dream

Keep on dreaming your dreams. I have given up so much to chronic illness. I am no longer capable of doing the things I was able to do a short nine months ago. But that doesn’t change who I am, though, and it shouldn’t change you.

So if you want to travel the world, you will one day. It may look different than you had imagined, but don’t ever give up on those dreams just because things look bleak from your bedside.

The hidden gem about chronic illness is that although we may lose a bit of our dreams for a little while, we enjoy the sweetness of triumph in even the smallest of things. We don’t take the little things for granted. There is joy in that. Too many people walk through this life never appreciating everything they have.

Take pride, little warrior. Soon this day will pass.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

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When I Finally Learned the Names of My Chronic Illnesses

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Looking back, “it” had always been there, lurking in the background. But the first real memory I have of it was when I fainted while watching a movie at school. I would have been about 10. 

From that point on, particularly once puberty started, it really tried to dominate my life with migraines, fainting, dizziness, shakiness and brain fog. It made me tired doing the simplest of things. It made me feel “off” — a lot.

Doctors spent my teens testing me for all sorts of things — diabetes, glandular fever — anything to explain the symptoms that were stopping an otherwise healthy teen to get on with her life. But in the end, there were no answers. I just had to get on with it.

I got through university and landed a job working full time as a teacher. I loved my work, but it was always there. Every now and then, it would come out of the shadows and really knock me off my feet.

When the kids came along, it really kicked my butt. There were times when I didn’t get out of bed for weeks or lift a brush to make my hair look a little neater. If I tried to sit up, I would have pains across my chest like a vice. Walking to the kitchen to make a cup of tea would leave me breathless and shaky. There were times when my husband would find me collapsed on the floor unable to move or speak.

The doctors told me it was post-viral ME, but I knew that was just an alias. I wish I knew its real name.

When my babies grew, they were all bendy. One was super skillful but faced challenges with stamina and fatigue. It wasn’t going to get them. I started to read and then read some more.

Then in my mid-30’s, I finally learned its name. And it turned out that “it” was a combination of chronic illnesses. I learned about dysautonomia/autonomic dysfunctionEhlers-Danlos syndromehypermobility and the role of connective tissue.

I now had the puzzle pieces. I could learn to play it at its own game.

That’s when the balance of power shifted. The more I learned about it, the more my life became illuminated. I finally understood why my body went into shock after going through labor with my second baby. I understood why I’ll pass out after eating a carb-heavy meal, why I can’t stand for any length of time and why I get goose bumps on a hot day.  

I also realized that in the nearly 30 years since I have been sharing my life with my chronic illnesses, I’ve been learning how to manage them to keep the symptoms at bay. Many parts of this management have naturally become part of what I do every day. Others, however, take a little more effort.

I’m fortunate to finally know the names of my chronic illnesses because at last I fully understand how to make our relationship work.

As for my babies, I know that when something is standing in the light, it’s much easier to face.  

Follow this journey on My Stripy Life.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. 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

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A Day in My Life as a Mom of a Daughter With Chronic Illnesses

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Like most parents, I want the best for my daughter Paige. It was never easy for her growing up. She always “beat to her own drum,” so to speak.

She had trouble keeping up with others and was set apart because of it. She wanted friends, to play as others did, to learn as others did. We did everything we could for her throughout her school years. She had many struggles and conquered each one. Many tears fell over the years. But she made it, graduated and I couldn’t be prouder. She is perfect in my eyes, only I think she sees herself as less than perfect. Some days her mind wants to do something and her body is not able, or her body is physically able and her mind isn’t. The two rarely sync together.

She is strong, smart, and has the drive that will get her through dysautonomia, gastroparesis and meralgia paresthetica and anything else the world wants to throw at her. It won’t be easy, but has it ever?

A typical day is going with the flow. Every day I ask, “How are you?” No two days are alike. If she is having a flare-up, I leave her alone until she can cope. The brain fog, stomachaches and legs not cooperating throw her off and until she can feel comfortable being mobile, I feel she’s best left alone. Some days I help her around the house. Some days it’s just making sure she has everything she needs (food, water, etc.).

Dysautonomia doesn’t always allow her body to regulate its temperature, so it’s been a war with the thermostat lately. Hot, cold, hot, cold…

Another struggle is food. What she can eat one day may set her gut into orbit the next, thanks to gastroparesis. Some days she can’t eat. It’s a never-ending battle.

Meralgia paresthetica basically is when her legs get tingly, so she moves into a different position. For her it’s bothersome than anything, like how your leg feels when it falls asleep, so I don’t worry too much about it.

People can be cruel. Ever dealt with a bully in school? Ever dealt with adult bullies? She is constantly bullied. Take shopping, for example. With this outing she uses a scooter to get around. The looks and the rudeness is hard on her. She’s 19, why use the scooter? Leave that for “someone” who really needs it, is what I imagine people are thinking. Sometimes she walks — she’s not always in a chair.

The permanent parking placard is nerve-racking. She’s a teenager and can legally park in accessible spaces. It’s not just a close spot to the building — it’s a reminder that she has a disability. Pulling into and exiting the car can be a challenge. Because she doesn’t “look sick,” we often get dirty looks. I want to pass out cards explaining her illness.

It’s not fun. It’s a nerve-racking, challenging, daily struggle of life. There are unanswered questions like: Will she get better? What started this? Are there underlying issues? How will she handle children? Will this be passed on to her children? What about college? Work? Driving? Will her life ever be “normal” or is this her “normal?”

On good days her autonomic nervous system functions as it should and she gets a glimpse of what normal is. I am thankful for the few good days.

What’s it like for me, her mom?

It’s hard. It’s hard to listen to her talk about her dreams being shattered. About not being a productive member of society, about feeling useless. I encourage her, but I don’t have answers. I feel useless, I feel empty, I feel like I can never do enough. If I had a magic wand to make all the illnesses go away and life would be great and she would be cured, I’d do it in a heartbeat. But in reality I don’t have a magic wand. It’s hard because she looks to me for answers, for guidance, and I find myself not knowing what to say and I can’t fix it. The best I have is a listening ear, hugs, tears and a prayer. All I can do is my best, even if it’s a hug.

Those are some of the struggles of living with my daughter who has chronic illnesses. It’s not fun, but it’s not all doom and gloom either. It’s, simply put, our life, and we handle it as it comes. 

When Paige is discouraged, I always tell her it’s going to be OK. We will figure it out. We always do and we always will. We will beat dysautonomia. We will beat gastroparesis. Paige, you will be successful, because I’m not giving up without a fight. There’s always a way. We just have to find it.

My greatest wish for Paige is for her to know her self-worth and how special she is to others. She is an amazing person and has so much to give to others. Her illness doesn’t define her, her strength and loving nature does.

If you are the parent of a child with a chronic illness, don’t think you have to take the advice of the first doctor you see. Seek a second opinion or a hundred — this is your child you are fighting for. You are in control of their care. Educate yourself so you have the knowledge to not only help your child but to help during doctor’s visits. Knowledge is power. 

Life is full of challenges. It’s just that we “beat to a different drum,” so to speak.

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? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When You Compare Yourself to 'Healthy You' After an Illness Diagnosis

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Yesterday, I saw one of my middle school teachers among the crowds at my workplace. I thought about talking to him and asking if he remembered me, but I decided against it. Mostly because he was one of my least favorite teachers, but also because I was worried about what he’d think of me today.

woman with monitors on chest
Ashton.

Everyone always considered me to be a bright student. In elementary school, I was told I had the reading level of a high schooler. In middle school, I was accepted into a gifted and talented program. I graduated high school with a 4.2 GPA, which allowed me to become part of the honors program at my university. I studied Spanish and had opportunities to travel to wonderful places. In 2014, I graduated summa cum laude, married my college sweetheart and started graduate school for library science. All of my teachers thought highly of me and that I would make something of myself. An actress, a teacher, an artist, an author.

So what was I doing working 20 hours a week as a front desk attendant? Not long after getting married and starting grad school, I started having difficulties with things like exercising and even doing dishes. Ten months later, I was diagnosed with dysautonomia/postural orthostatic tachycardia syndrome. In those 10 months, I had quit grad school, gained a fair bit of weight from exercise intolerance, and made more use of my new health insurance than I ever thought. My husband was making enough money to support us both, until my student loans kicked in and the medical bills piled up. We realized I either needed to find a job or attempt to go on disability.

Finding a job with little experience that doesn’t require you to stand eight hours a day is harder than you’d imagine. After a year of searching, I got a job as a front desk attendant. The main duties of my job are done from a computer chair, so I don’t have to worry about my health while at work. However, on my days off I sleep for 12 or more hours to let my body recuperate.

There are times like yesterday when I reflect on my past and compare it to now. And honestly, it makes me feel like I’ve let everyone down. “Healthy Me” had such a promising future full of endless possibilities. But instead I feel I’m working the bare minimum. But “Healthy Me” didn’t know. “Healthy Me” never worried about the limitations of her body and the effects it would have in everyday life. My current struggles and limitations have molded me into an even more compassionate and understanding human being. And I’m still using the smarts and creativity “Healthy Me” thrived on in school. It’s being used in a different manner, but isn’t that what intelligence and creativity is all about anyway? Thinking outside the box?

So yes, I’m working as a front desk attendant. But I’m a very cheery front desk attendant. I take initiative in my workplace. I wear themed earrings. I organize files and troubleshoot computers. I get along well with my supervisors and coworkers. I’m getting quicker at solving cryptogram puzzles. My crochet skills have improved. I have learned to cook meals without burning the kitchen down. I have sold my artwork to people around the world. I have a loving husband who makes me laugh and tells me I’m beautiful countless times daily. I’ve made new friends online who are facing chronic illness battles of their own.

The people of your past (including yourself) do not know what obstacles you have faced in your journey to present day. So be gentle on yourself and know there are many different types of success, big and small.

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? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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