A request from your chronically ill friend: what I need when we talk about my sickness.
When I meet new people, I often struggle to explain what I need. This is it.
When I was 14, I woke up with a fat face.
I was sick with a fever higher than I had ever felt. My face felt like a sumo wrestler had crammed a cantaloupe into my ear.
My mom took me to the emergency room in the closest town to our family’s remote lake house in North Carolina. Receptionists shooed me in, nurses injected butt shots, and doctors gave me doe-eyed stares. They had no idea what was wrong with me.
This routine of waking up suddenly sick, with a fat face and a spiked fever, continued for years.
Finally, when I was 16, doctors handed me a diagnosis and a pill regimen and told me I might be sick forever.
I was young enough that my pediatric doctor called to give my mom the diagnosis over the phone. The most dramatic part happened before the diagnosis, though, when they told my mom that they had somehow lost my eight vials of blood (which had taken hours of sweat and tears and people holding me down to get). Otherwise, the phone call was short and I could hear the words through the phone my mom held up to her ear.
“I’m so sorry,” the pediatric doctor said to my mom. As if we knew anything about an autoimmune disorder called Sjögren’s syndrome, with hallmark symptoms of dry eyes and a dry mouth, and why we should possibly join the doctor in feeling sad.
Now, more than 10 years later, I’m living fairly well with this autoimmune disorder.
But still, when I meet new people, I struggle with how to explain what I need. Part of my introduction to new people has to include these words: “I’m sick.” And that’s not easy.
So hello, new friend. Here’s what I need you to try to understand when we talk about my life with a chronic illness:
1. I need you to let me have my green couch moments.
After that first day at the hospital in North Carolina, they sent me home without answers and I slept on the green couch at my family’s lake house for days. I remember feeling sad, watching my cousins jump off the diving board at the end of the dock.
But I mostly remember feeling sad about how my family looked at me. They all had the saddest eyes, like they knew something about my future that I couldn’t comprehend at the age of 14.
For some reason, I’ve continued to have a lot of different green couches over the years in various houses and apartments. Sometimes when my sickness takes over, I have to spend days — or weeks — recovering on my green couch. I need you to let me stay there to rest and wait for Netflix to ask me, “Are you still watching ‘Friends’?”
2. I need you to show up.
No one knows what tomorrow holds. But if my tomorrow puts me in the hospital, I need you to come. I need you to show up. Sure, you can bring me flowers, but I really just need you to be there at my bedside, hanging out.
In high school, when my hospital visits lasted for 12 or 14 days of sucking on lemons in the pediatric wing to trigger my salivary glands and going for walks wheeling my IV bag, I remember the friends who showed up. And I remember the friends who only came after my parents bribed them to sit with me for a couple hours so they could go home to shower.
People were afraid. I get it. I was afraid, too.
3. I need you to stop asking why doctors can’t fix me.
The autoimmune disorder that I have is chronic, meaning there isn’t a cure, just like many other people in the world with chronic illnesses. I know it’s confusing — you come down with a cough and you go to the doctor to get better.
For me, it’s not that simple. I take a couple of medications that help tackle my individual symptoms and improve my quality of life with pain management, but that’s it. That’s all doctors can do at this point.
Please stop asking why. Doctors don’t know. I don’t know.
4. I need you to try to see my invisible pain.
All those years when I woke up with a fat face were just my invisible illness trying to make a guest appearance for one episode. Mostly, my body suffers in ways that you can’t see.
The more visible symptoms happen in cold weather when the blood rushes away from my hands and feet. This is when you watch in amazement because my white hands look like a dead person’s. I need you to know that the invisible pain hurts just as bad as the visible pain.
5. I need you to stop asking me how I feel today.
Some days, it’s a big deal to just get out of bed because my joints ache and after even 10 hours of sleep, I still feel like I have a hangover. My right foot and my back feel broken, and my dry eyes build a white film on my contacts that feels like I’m watching the world through a dirty fish bowl.
When you ask me how I feel today, the answer is complicated. The list of pain that’s both inflamed or subsided is longer than we need to hash out. And sometimes the answer to your questions makes me sad, grieving the loss of a dream of a pain-free life I think I deserve.
6. I need you to let me weep in my mom’s arms, even as a grown adult.
Next month, I turn 27. Recently, I wept in my mom’s arms in a shaking way that startled even me. It was the day I got another doctor’s bill for hundreds that I couldn’t afford, and I wasn’t sure if I could even go to my specialist appointment because it might mean I couldn’t pay rent or buy groceries for a couple of months.
My health insurance doesn’t get it. They cover so little, deeming appointments and blood work as “medically unnecessary.” But truthfully, nothing about this sick life is easy to handle, even as a pretty independent adult. I need you to let me weep from the deepest places and not tell me to just shake it off.
7. I need you to stop telling me I can’t.
I told my parents I wanted to go on a mission trip to Africa. Instantly, they said, “You can’t.”
I’ve heard these words before, about studying abroad or becoming an elementary school teacher, with planes and buildings and countries with germs lurking behind every corner. Their advice comes from places of love. But I can’t have you joining in on this whole “You can’t” chant.
Until a doctor gives a definite “No, you can’t do that or go there,” then I need you to invite me to go places. I need you to challenge me and dream with me.
8. I need you to let me be stubborn.
I have a cousin who’s searching for a diagnosis for something autoimmune right now. My biggest prayer for her is that she stays stubborn, even after she knows she’s sick. She studied abroad before she got sick, before anyone tried to tell her she can’t.
The last couple of years, I moved to a new time zone, even when some told me I couldn’t. You might get to know me now and want to protect me in a plastic bubble everywhere we go. Please don’t. If you’re planning a trip somewhere exotic, invite me. I’ll tell you if it’s too much.
Let me wrestle in the dark with my own stubbornness, just like when I was a little girl and insisted on riding my new bike with shiny tassels on the very first night, even though it was too big and pitch dark outside. I might fall down and get hurt, but I promise you I’ll learn from stubbornly ditching the training wheels in the dark.
9. I need you to tell me to stop staring at that hospital waiting in the sky.
I live in Dallas with a clear view to Baylor hospital in the skyline. Sometimes, while I’ve sat by the pool at my apartment, I’ve caught myself staring for too long at the hospital waiting in the sky for my future arrival.
You might be familiar with how we tell the “sick narrative”: sick, sicker, dying, gone. I have a higher risk of lymphoma and other complications, but this doesn’t mean that’s definitely how my story will end.
So if you catch me anxiously staring at my scripted future, stop me. I need you to remind me that the story can twist in so many directions, especially with technology and modern medicine that completely shatter traditional death sentences.
10. I need you to let me change the world today. Now.
The best (and worst) part about being sick: It moves me into action. I don’t have time to wait. I probably quit jobs sooner than you would or chase after dreams in frantic ways while you put yours on the back burner. I also don’t have time to waste.
It’s scary and exciting all wrapped into one. I need you to help me figure out how little me plays a part in this big story. Let me fight for things that matter today because tomorrow is just a gift.
11. I need you to love me like the 80-year-old grandma I am.
I’ve finally found a pill box that fits all the vitamins and medications that I need to sort out for designated times each day. My dream night is one cozied up and warm on the couch, followed by a 9:30 bedtime. Sjögren’s means I don’t produce enough tears, but if I did, I would cry while laughing at how many times I have to go to the bathroom because of all the water I have to drink to stay hydrated.
Yes, me and your 80-year-old grandma probably have more in common than you and I do. I’ve completely accepted this fact. Especially since I’ve been 80 since I was 16.
So love me like a grandma! Stop inviting me out to all-nighters and saying it’s so funny how I go to bed early and love warm socks. It’s not funny or cute. It’s who I am.
My autoimmune disorder is in no way categorized as “the worst.”
Believe me, people suffer every day with far worse, much more incurable diseases than mine. Some days, my illness feels mostly annoying, like an accessory I carry around and must remember to bring with me when I leave the house.
But I hope you will one day meet one of my best friends, a woman who has learned to love me and my sickness. She remembers little details, like how I lack the saliva required to eat dry pretzels filled with dry peanut butter. She figures out how to eat each pretzel with a huge swig of water so I won’t choke, and she does it with me, too. Together, we laugh.
She sits with me on the green couch for Netflix marathons when I’m sick. And together, we cry.
That’s what I want, what I need, and what I want you to know about me, friend: We all have our stuff, and this is mine.
I thought Ashley’s story was exactly what we all wish we could say to family and friends, I wanted to state a few extra things I would like to add to this article.
Stop telling me to stop trying to find a cure! I am not going to just take this laying down. I need to research for my own sanity, start a support group, start a blog, to keep me busy and active with my brain.
Stop telling me a new treatment you heard of from a friend of a friend that you know will cure me. Including coffee enemas. or some crazy diet or pyramid business that supplements will cure me.
Stop telling me to stop Gluten, been there done that.
Stop judging how I should feel on certain days because it may interrupt our plans.
Stop saying you will help out when needed and never come by.
Stop telling me to not be sad, or depressed with my diagnosis. Some days, I just can’t be positive.
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.
Doctors aren’t sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS. Current thinking is that there are a number of mechanisms. Some individuals have peripheral denervation (neuropathic POTS); some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic POTS); and many individuals with POTS have significant deconditioning.
Is there any treatment?
Therapies for POTS are targeted at relieving low blood volume or regulating circulatory problems that could be causing the disorder. No single treatment has been found to be effect for all. A number of drugs seem to be effective in the short term. Whether they help in long term is uncertain. Simple interventions such as adding extra salt to the diet and attention to adequate fluid intake are often effective. The drugs fludrocortisone (for those on a high salt diet) and midodrine in low doses are often used to increase blood volume and narrow blood vessels. Drinking 16 ounces of water (2 glassfuls) before getting up can also help raise blood pressure. Some individuals are helped by beta receptor blocking agents. There is some evidence that an exercise program can gradually improve orthostatic tolerance.
What is the prognosis?
POTS may follow a relapsing-remitting course, in which symptoms come and go, for years. In most cases (approximately 80 percent), an individual with POTS improves to some degree and becomes functional, although some residual symptoms are common.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS) and other Institutes of the National Institutes of Health (NIH) conduct research related to POTS and support additional research through grants to major research institutions across the country. Much of this research focuses on finding better ways to prevent, treat, and ultimately cure disorders such as POTS. NINDS-funded researchers are investigating if low levels of the hormone aldosterone contribute to low blood volume in individuals with POTS, and if high levels of angiotensin II, a peptide that helps regulate blood volume, leads to decreased adrenal sensitivity. Other NINDS-funded research is investigating the hypothesis that POTS is a syndrome of different subtypes, with different underlying mechanisms. Additionally, the NINDS funds the Autonomic Rare Diseases Consortium to further understand disorders such as orthostatic hypotension and hopefully alter the course of disease.
NIH Patient Recruitment for Postural Tachycardia Syndrome Clinical Trials
|National Dysautonomia Research Foundation
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Last Modified December 2, 2015