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There Is So Much More to Chronic Illness Than Just 'Being Sick'

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Over the past three years I have seen countless specialists in and out of my state and trialed close to a dozen medications for what was thought to be POTS, orthostatic hypotension, and autonomic dysfunction only to find out it may be something entirely different. I was essentially pumping my body full of medications for two years that only ever caused me to feel worse because they were treating something I didn’t have.

Like many with chronic illness, I fight from the moment I wake up until I lay my head down at night, only to repeat it the very next day. Losing my independence, my ability to work and drive, to take a walk or go to the store alone. So many nights where dinner hasn’t made it to the table because I can’t stand long enough to make it. Constantly pushing myself and fighting for normalcy.

Many of us spend hours researching case studies and medical journals, trying to become our own best advocate. Requesting specific testing to rule out certain conditions and disorders. Walking into doctors appointments completely vulnerable with tears in our eyes, simply pleading for help. We cross paths with doctors on autopilot, who because we don’t fit those cookie cutter profiles don’t know what to do with us, therefore passing us on to yet another specialist.

Positivity, strength, and hope start to fade the longer time passes with no answers or improvement. Days and nights where you are just tired. Tired of fighting, questioning if the day will ever come where this gets easier. But still somehow you keep going.

There comes a point where you can no longer hide how you’re feeling and you see the direct impact your illness has on your family. Watching my youngest cry because she wants to make me better and my oldest at 10 years old yelling at me if I overdo it or if I don’t eat. Their drawings on the fridge quickly turn into bold words of encouragement. My husband becoming the sole provider for our family and my mother carting me around to every doctors appointment, researching every possible lead, and being the voice of reason when I lose hope.

We face judgment. Judgment from strangers who see us using a disabled space, from family and friends who just don’t understand. Many of us look healthy, like we fit in. We still smile and laugh like every one else — that doesn’t change just because we became ill. So many people associate seeing a wheelchair or someone who has lost their hair to cancer as the definition of being sick. I’ll tell you one thing, I was one of those people. Quick to judge. But I quickly realized not every illness is visible and there are so many beautiful souls out there fighting and you would never know just by looking at them.

So when you hear someone has a chronic illness, I hope you realize it goes far beyond just being sick. It requires strength and perseverance, knowledge and vulnerability. It is 24/7. We are fighters and warriors, but we are also human beings who need your support and encouragement because this may very well be the biggest fight of our lives.

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Thinkstock photo by Grandfailure

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The 'Hurry Up and Wait' Process of Chronic Illness

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They always say “Patience is a virtue,” but for someone living with an invisible illness such as my dysautonomia/postural orthostatic tachycardia syndrome (POTS), it is something that is hard to come by at times. Part of it may be society today — we are a “I want it now” society in general, but when you are not feeling well it can be difficult waiting for the day that I am going to feel at least better.

For me, medication and medication changes challenge my patience. It often takes months to find the exact dosage of medications and much tweaking before you find the perfect amount your body wants to make the correct changes to your system. Is it perfect? Definitely not, but sometimes our goal living with a chronic illness is just to feel better than you do. I dread the news of a new medication! How will it affect me? Will it work? How long will it take until they find the proper dosage?

We, of course, have many other aspects of chronic illness in which patience comes into play. How many hours have we waited at a doctor’s appointment or waited to get an appointment with a doctor? How many of us really want to do something, but have to wait for a “good” day to do it? For me every morning requires patience waiting for my morning meds to “kick in” so I will be able to function. Yes, it is a hurry up and wait process.

Some people may be more genetically predisposed to having the ability to be patient more than others. Some people’s tolerance for feeling crappy or in pain may be stronger than others. Others must find ways to gain the patience they don’t naturally have. So what can you do to gain this patience? I will share a few things that I do which may work for some and not for others.

Have faith! If it helps you, draw on your higher power for comfort and hope. I find a daily devotion that seems to put things in perspective or at least give me something to think about.

Keep busy! I find this the most helpful. I busy myself with numerous little “projects” to keep my mind occupied and make the time go faster. They don’t have to be big things, just something that keeps you from thinking about the other things you don’t want to. It could be a book, a crossword puzzle, making lists of things to do when you feel like it, watching a good documentary, movie, or TV show, listening to music, or a hundred other little things.

Find some kind of hobby. I am naturally a collector so I enjoy my collections of various things, organizing them, reexamining them, or hunting for new things on the internet. Find something you enjoy and that takes up a little time.

Have a support network. Talk to friends or family. Keep active on social media or in person. Sometimes it feels like we are locked in our own small world. We have to find ways of interacting even if we can’t physically be out there doing all the things we wish we were.

Lastly, try and find pleasure in the small and the simple things. Get outside in the fresh air. Find beauty in nature and small gestures, give out kind words, do what you can for others. Things have a way of returning to you.

I know this small article may be of very little help, for all of our “patience” reserves get depleted at times! I guess when that happens all we can do is “hurry up and wait!”

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Thinkstock photo by SIphotography

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When Your Illness Can't Be Found in a Textbook

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I have a very rare form of autonomic dysfunction that affects my HCN channels in my brain that makes my autonomic nervous system (ANS) prematurely age. My ANS is equivalent to a 60-year-old’s stuck in a 20-year-old’s body.

Never heard of this? Neither had I. I was always told I had autonomic dysfunction but they could never truly classify what kind it was. I was sent to a doctor at the University of Connecticut Health Center who specializes in the aging process because I was showing signs that suggested I was aging.

My doctor said to me,”Well, currently this is not discussed in any textbooks and many doctors for the longest time found this as a controversy, but you are prematurely aging. There is proof that this happens in a handful of people. How many people? I could not tell you.” As millions of questions raced through my heads as to what that meant, I sat there with a sense of relief, because I finally had an answer.

Having an illness that is only known by a few doctors in the United States is very difficult. This causes many challenges when I am not able to see my doctors at UCONN, but even harder to explain to an everyday person. Many people think I am making it up. Others can’t comprehend that I feel like I am an older person in a young person’s body and that I can’t perform to the capacity of a typical 20-something-year-old, especially since I look completely normal (with great concealer on). The stigma behind “non-textbook” illnesses is very real and needs to be addressed. New diseases and illnesses, sadly, seem to be becoming the norm.

Recently, my doctor received a huge amount of funding towards my illness and he said, “You may not be around for it, but someday, I promise, your illness will be in a textbook and accounted for.” That has given me the drive to push forward another day.

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What It Was Like Going to Doctors With Undiagnosed Subacute Combined Degeneration

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“You have a mild mood disorder,” my hematologist/oncologist said.

“You know PTSD could cause physical pain, right?” said the rheumatologist.

“I believe this is an autoimmune issue,” said the gastroenterologist.

“There is no indication that this is autoimmune. It’s time you see an infectious disease doctor,” said a different rheumatologist.

“Blood results are normal. Maybe you should see a sleep specialist,” said the infectious disease doctor.

It felt like I was in a forest or in the middle of the ocean drowning. These are just a few responses I received from different doctors. In between doctor appointments, I was Googling symptoms and attempting to diagnose myself, which is not what anyone should do. It will take your mind to difference places to a point where you become exhausted physically and mentally. The problem with having a rare condition or illness is multi-factored. There isn’t enough research on symptom severity, causes, treatment or prognosis. Additionally, many of the symptoms are similar to more common conditions that are not diagnosed unless blood results or other testing is positive. It is an injustice to those searching for answers. To all of you out there in physical pain with no answers or validation, I hear you… I understand you… I’ve felt your pain… and you are not alone, as hard as that is to comprehend at the moment.

The amount of time I wasted “doctor hopping” makes me absolutely sick to my stomach. To be dismissed and given the run around because doctors couldn’t figure out what was wrong with me is exactly what is wrong with the medical system. While I am sure depression and PTSD played a part in my overall health and well-being, that was not the primary issue. The primary issue is that I have subacute combined degeneration (SCT) and autonomic dysfunction.

SCT is a rare neurological disorder, usually caused by prolonged vitamin b12 deficiency, that affects the brain and the spinal cord. SCT is also considered an acquired myelopathy. Myelopathy is defined as disease of the spinal cord. The other condition, autonomic dysfunction, is considered rare but is probably more common than people realize. The autonomic system is responsible for maintaining the body systems and performs these tasks automatically. In other words, the autonomic nervous system acts without us being consciously aware.

I have been deficient in vitamin b12 since 2013 from the medical records I have. I also have a long history of anemia and migraines. I received vitamin b12 shots for a period of time, but no one told me I needed to have them regularly for the rest of my life. Why hadn’t any of the 50 medical professionals I have seen in the last 2.5 years provided me with this information?

The amount of times I had to describe what I was feeling and how it felt suddenly became an unconscious process. The feeling I experienced when leaving doctor offices suddenly became normal, as if I was becoming content or immune to what these doctors were saying. I left feeling invalidated, lonely, “crazy” and distrustful. While this was all going on, I lost many people in my life as I didn’t have answers for how I was feeling or what was “wrong” with me. Since I didn’t have the answers, many people started thinking I was either lying, faking it or mentally unstable. Not only was I losing my physical capabilities with no acknowledgment or validation, I was forced to accept and cope with physical limitations, changes in daily life and activities, and losing people who were in my life for a long period of time. People can say “they weren’t friends to begin with,” but it doesn’t necessarily make the grieving process any easier.

To those who have or have had similar experiences, please know you are not alone and there are people who understand you. You absolutely cannot give up because there can be an answer one day. Be your number one advocate. You have to live in the body you were given, and therefore, people do not get a say in whether your symptoms are psychological or physical. You have to keep fighting. We do not get a choice in the diagnosis or prognosis, but we do have the choice to fight for our lives, and I encourage you to continue. Although the doctor appointments mentally beat me up, it led me to make the decision to go to Cleveland Clinic where they validated me and provided me with diagnoses as well as treatment options. Had I not gone through the above experiences, I would not have met some of the most amazing, compassionate and understanding doctors who provided me with the validation I wanted and needed. Do not give up.

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Thinkstock photo by Jochen Sand

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So You Want to Date Someone With Chronic Illness?

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Here are some words of wisdom from a sassy someone diagnosed with autonomic dysfunction, postural orthostatic tachycardia syndrome, asthma and benign joint hypermobility syndrome. I felt inspired to write this list after dealing with the pain after a few relationships ended due to a misunderstanding of chronic illness. I’m constantly seeing this frequent occurrence in support groups for chronic illness and it’s devastating.

1. Please don’t ever tell us we’re being lazy. Just don’t do it. When you have a chronic illness, you’re like an older cell phone that can’t hold a charge for very long. The sad part is I don’t have a rescue energy source. I have to sit down or take a nap. Wherever. 

2. You’re going to need to prepare yourself for your significant other visiting the doctor, emergency room and pharmacy far more than you’d ever imagine. 

3. There are going to be days when I am the grouchiest person ever. This should be taken with a grain of salt. Pain is a constant factor and when you’re hurting all the time it’s hard to be a Pollyanna. 

4. Even though I’ve been through a lot and have established a tough cookie routine, sometimes I grow weary of the poking, prodding and pain and just want someone to cry on. Yes, I kept my cool when they brought in the 10-inch needle. No, this doesn’t mean I’m peachy keen on the inside. 

5. I am a huge cuddler. The great part of being sedentary at times is our desire to cuddle is through the roof, because some days, that’s all we can do.

6. Netflix, blankets and cozy pajamas are the way to our heart. 

7. I will not let my illness define me. I still have dreams and aspirations. I will still accomplish them. On those good days, you need to be prepared for adventures because if I have the energy, there’s nothing that will stop me. 

8. I will still take care of you. I will be your rock (slightly unstable rock, but still) and do my absolute best to make sure the relationship is taken care of.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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Reframing Chronic Illness: When My Body Wrote Me a Love Letter

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Pain. Insidious. Fatigue. Intolerable. Thirst. Unquenchable. So dizzy, I walk like I’m on a ship listing to the right.

This is my body writing me a love letter, although that is not what I told myself or anyone else for a very long time.

My body is betraying me, I said.

Out loud.

Numerous times before, I realized that declaring a civil war on myself was not the best idea.

But that’s what it felt like: my body wasn’t working, cooperating, getting better.

It felt like all of my doctoring and researching and medicating and supplementing had turned out to be an expensive, exhausting, cruel game — one I didn’t know how to win.

I collected a bevy of specialists, and they were mine, mine, all mine. My cardiologist, my neurologist, my electrophysiologist. As if I owned them.

Lots of testing. Innumerable vials of blood.

I grew to love the cozy enclave of the MRI’s, with their whirling magnetic jackhammers serenading me.

My pain doctor scans the results. “You’ve got a lot going on. Your hip hurts because you have a labral tear. Did you have an accident?”

“Well, sort of…”

“What kind?”

“Fat ex-husband,” I say with a wry smile.

A week later, my neurologist regrets to inform me that I have failed the tilt-table test. It seems I have a severe case of orthostatic intolerance, or a body “allergic to standing.” She doesn’t like it. She wants to sit or lie down, even in the middle of the grocery store. She becomes muddled, incoherent, slurs her words.

They call EMS while I am sprawled out in the cereal aisle, boxes of Lucky Charms mocking me from the shelves above. The paramedics arrive; they shine lights in my eyes and ask me who the president is. I beg for saline as they load me into the ambulance. I notice the EMT giving me oxygen looks familiar.

“You look like Channing Tatum,” I breathe into the oxygen mask. He looks delicious. “Are you married?”

“Are you drunk?” he asks sternly.

“No! It’s 3 o’clock in the afternoon.” Damn EMT’s. Stop looking so good when my social inhibitions are gone.

I collect diagnoses that I have to explain, even to doctors. I say Ehlers-Danlos Syndrome (EDS) and they look at me quizzically.

Even though my body is staging a revolution, I look fine on the outside. This confuses everyone.

The ER becomes my best friend and my worst nightmare. I make frequent trips there in the middle of the night. They give me the ultimate trifecta: morphine, saline and potassium, singing the chorus of “Follow Up with Your Primary Care Doc Tomorrow,” as they make me sign discharge papers and shove me out the door before sunrise.

My scripts for opiates prove useless. They do almost nothing until they start to wear off, and then the pain ratchets up. I pass the “pain pop quiz,” scoring a spectacular 12 on a 10 point scale.

During the sleep study they torture me by putting electrodes, cords and wires over every inch of my body, keeping the hallways lights on super bright, and then telling me repeatedly to go to sleep.

I graduate summa cum laude with honors. Three sleep disorders and exactly zero minutes of REM sleep. Bravo!

My nightstand is filled with plastic bottles of pills. Some make me tired, some keep me awake. Some boost my blood pressure so I can stand up without passing out, but also make me itch like a kid with chicken pox, so I take another pill to stop the itching.

There is no “Plan B” for my body. Only Plan A.

Plan A: come on already!

I don’t have time to be sick. I’ve got bills to pay. Places to go and people to see, but I am too ill to go and see anything.

My hematologist gives me IV infusions of iron.

My neurologist gives me Adderall and sleeping pills. She suggests drugging myself to be less tired in the morning and more tired at night might be counterproductive. I nod.

My therapist tells me that I have to make peace with being ill. In my head, I give him the finger for a very long time.

My insomnia transforms into torturous hours filled with “pain-somnia,” and I discover that taping my pain pills to the center of my headboard is better than the 20 minutes of agony it used to take just to reach over to the nightstand.

This is my body betraying me.

No, this is my body writing me a love letter.

It’s telling me to slow down.

It’s telling me not to take it, or anything else, for granted.

It’s telling me that stress and unnecessary anxiety are best avoided.

It tells me I’m resilient, but not indestructible.

It tells me to rest when I am tired, to stop pushing through life as if it’s an endless ultra-marathon.

It tells me to stop obsessing about the future and all the great things that are going to happen “there.”

It tells me to be here now.

To be fully present.

To be right where I am, and to stop wishing I were somewhere else.

It tells me that this moment is crystalline in its simplicity.

Stunning in its absolute compression.

The gumball machine of my life is now spitting out moments instead of decades (or, at least, the illusion of decades).

This is my body writing me a love letter.

Your body is writing you a love letter, too.

This post originally appeared on Medium, here.

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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