Month of Gratitude, Week One: Satisfaction

As it is the month for gratitude, I am going to write at least one post a week this month discussing illness and gratitude. Although illness has taken many important things from me, there are many gifts it has given in return. One of the most important lessons illness has given me is to learn how to be satisfied and gracious in that satisfaction.

Dissatisfaction is a state of being for many of us, and it can be a valuable tool to help us achieve goals. I lived most of my life always thinking, literally, “what’s next?” I wouldn’t have been able to go to grad school twice, achieve my goal of getting a tenure-track professor position, climb mountains, or power through illness like a warrior the last few years if I didn’t know how to channel “what’s next?” into achieving goals.

Yet, this “what’s next?” also pushed me to make choices that weren’t good for my health and, more importantly, it blinded me to the immeasurable gifts I already had in my life. If I have one regret since getting ill it is that I took too much for granted and didn’t appreciate what I once had that is now gone. “What’s next” was a distraction from being mindfully present and allowing myself to surrender to satisfaction, to look around me and feel grateful for my life.

We are trained from a very young age to never be satisfied. We are conditioned to become consumers from the moment we are born and to look for “bigger and better.” Satisfaction, in American culture especially, is a truly radical idea. Everywhere we turn, we are constantly persuaded to want more and to be more. “Bigger and better” and “what’s next” are illusions; they create desires that can never be quenched.

Yet, as the speed in which my world spins has slackened, as the alacrity of my own body has dampened and my legs—once athletic and invincible—stumble along at a glacial pace now, I am now still much of the time. It has helped my mind be still as well. In moments that are thick with suffering when I’m lying in bed and surviving moment to moment, I am forced to live in the present. The pace of my world has significantly decelerated, but the images of life are no longer blurred in speed. They have color, texture, definition.

It seems ironic that illness would give me this lesson. If we are often told “your health is the most important aspect of life,” then you would think living with a life-limiting illness would be the most unsatisfactory state of being. Yet, “your health is the most important thing” is a platitude; it assumes that those of us who live with chronic illness have nothing because we don’t have “our health.” This is fundamentally false. The loss of my health and my independence has taught me to value what I still have and despite being ill I can still enjoy what I still have.

It has taught me that there are moments to savor in life. There are moments when all of the ingredients of life—the people in our lives, the words we say to each other, our perceptions of the world, our self-image—meld into something truly delectable. These are the moments when we can feel truly alive, feel the electricity of being human. These moments were not on my radar before illness—before I was forced to be still and live in the present. When you live under the spell of “what’s next,” it’s easy for these moments to pass by.

I try to find moments throughout the day to just breathe in satisfaction and feel it completely. 

Feel...

Satisfied with the limitations I have now and what I can still do

Satisfied with my appearance

Satisfied with spending most of my time at home

Satisfied with each moment I get to be outside and be part of the world

Satisfied with my relationships

Satisfied with my material possessions

Satisfied with how I physically feel in this moment right now

Satisfied with my talents and abilities

Satisfied that the present is here but the future is a mirage

Satisfied with the treatment I have right now

Satisfied with the time I had with my mother

Satisfied with the change I am able to enact in the world

Satisfied with the energy I can give to others

Satisfied that my condition may get worse or get better

Satisfied that I may work again or I may not

Satisfied that my place in the world is just as it should be right now

Feeling satisfied at times doesn't have to stop us from setting goals and seeking improvement in our lives and in the world around us, but it's ok every once in awhile to appreciate and value that what we have is enough. Satisfaction also doesn’t have to be a constant current and it is by no means a constant sensation for me, but illness has forced me to look around at the world and appreciate the gift of life. It is an integral part of living with acceptance. In those delectable moments I can say thank you for the giftedness of life, even if it’s just for a breath—but I’ll make it a long breath and try to feel an entire lifetime of satisfaction in that moment.

I hope that you also have moments of pure satisfaction, moments where you can just stop and say "thank you."

How has illness or any other setback in life helped you feel gratitude? 



Here's a great TED Talk about gratitude: "It is not happiness that makes us grateful. It's gratefulness that makes us happy"

9 Things to Say to Someone with Chronic Illness

I’ve read many lists describing “what not to say to someone with chronic illness,” so I wanted to offer a new spin. These lists are valuable for the chronically ill and the healthy, but the lines of communication between us can be fraught with misunderstanding. It’s important to recognize that there is a lot we can still say to each other, and these communications can be positive. This is an extension of an earlier post about how to help a loved one who has chronic illness. Of course there is much more that you can say to someone with a chronic illness, but this is a good place to start.

1.  “I believe you”

This one is especially potent. For many of us who have invisible conditions, we hear “it’s all in your head” everywhere we turn. I think there’s a cultural assumption that physical illness manifests in tangible, obvious signs: loss of hair, paralysis, loss of weight, etc. But often, there is no visible trace of debilitating diseases. You can’t “see” a broken autonomic nervous system, or an inflamed colon from IBD, or the ravages of kidney disease. With conditions like Dysautonomia, the medical establishment even struggles to identify and diagnose it because of its nebulous nature; the patient may “look normal” but they live a life that is anything but normal.

If a loved one tells you about their condition, their symptoms, and their limitations, they are showing an incredible amount of trust in you. It may be easy to interpret anyone’s response to their condition as “laziness,” but trust that they are fighting a battle every moment that requires tremendous effort. Recognize the incredible amount of strength it is taking for them to fight this battle.

Saying these words to your loved one or friend is a beautiful gift they will be eternally grateful for.

2.   “I want to understand”

As an extension to #1, I often see in the health communities I’m in people discuss the lack of support they receive from friends, family, spouses, etc. because loved ones do not understand the symptoms of the condition. Sometimes it’s difficult to wrap our brains around all the ways illness can manifest. Why would someone who looks perfectly healthy suddenly start fainting whenever they stand? How is that a thing? Yet, it really is a thing with Dysautonomia. Fact truly is stranger than fiction in the world of illness.

Often when you have a chronic illness, people come out of the woodwork with unsolicited advice and sometimes sanctimonious suggestions about how we should be managing our conditions. This is not the place to start:

A simple Google search can go a long way in understanding your loved one’s condition and symptoms.  Understanding the Spoon Theory also will give you some idea of how they live and plan their life. Asking them questions about their condition and treatment can also give you a lot of information. Your loved one is probably so informed about their condition that they can present a powerpoint at a medical conference on it, especially if they have a rarely diagnosed condition. As with #1, if you say you want to understand what they are experiencing, it shows that you value and appreciate their struggle and efforts to manage their health.

3. “How can I help?”

Learning about their condition may also give some insight about how to help them with their battles. Your loved one may need help with simple tasks, but more than likely your loved one will need your understanding and empathy as they try to live a full life despite illness. 

Asking for help sucks. We are conditioned early on to value our independence and brush off any appearance of vulnerability. I have never ever been good at it, but I have learned that it is sometimes necessary. If you take the initiative to ask your loved one how you can help them or how to be available to help, then they do not have to go through that difficult process of getting the strength up to ask for it.

4. “Can I visit, call, email, text?”

Not everyone who is managing a chronic illness is home-bound. Some of us are, and some of us manage to live full lives. No matter the level of functionality, however, you have your good days and bad days with chronic illness, and we’re in a constant battle with our bodies to force them to comply. This can make staying in contact with family and friends difficult, especially if driving or leaving the house is challenging.

Illness is isolating, devastatingly so. This was something I’ve learned to live with but I was not at all prepared for it at the beginning. I’ve been lucky that my friends and family have been understanding as I have become home-bound over the last year.

Know that your loved one would give anything to be able to have a vibrant social life and be more active, so be patient as they navigate life on their own terms. If you can reach out to your loved one, you can help get them over the bridge of the isolation and bring some joy to their life.

5. “Here’s a funny story”

As an extension of #4, if you can say something to your loved one to brighten their day, that’s usually better than handfuls of chocolate (most of the time at least).

My good friend Carrie Anne has Crohn’s Disease and we usually chat online or text throughout the day, even though she lives not far from me. We call ourselves Team Calamity and try to lift each other’s spirits each day with our affinity for the absurd. When my friends come by and we play games, we unleash the floodgates for trash talking and your mom jokes. These are moments I can try to forget about being ill and just enjoy life, and it’s pure bliss.

Your loved one may sometimes need empathy or a shoulder to cry on, but a good laugh is more powerful than almost anything else you can give them.

6.  “Let’s do something fun that’s within your limitations”

In relation to #4, your loved one may have limitations but they still want to live the fullest life possible. They may not be able to do the things they used to be able to do, but they still want to do whatever they can. If someone puts pressure on me to do something that used to be easy for me but is now difficult or impossible, I shut down. I cannot participate if expectations are impossible for me to meet. 

You can talk to your loved one to work together to find alternatives so they can participate the best they can and still have a great time.

7. “This can be hard for me too”

It’s also hard for friends, family members, or even acquaintances to watch someone suffer, often inexplicably. It’s a frustrating, disheartening, and aggravating process for them too. I think it’s ok to share your own struggles with adapting to your loved one’s illness because it shows you are on their side and invested in their success. I’ve seen this particular problem lead to serious stress or even dissolution of relationships. It’s hard to accept that your loved one has serious limitations and needs help.

Being a caregiver is a tough gig. I’ve watched my husband do it and my dad be a caregiver to my mother, and I’ve realized they have it harder than the one they are caring for. Significantly harder. My husband is the sole breadwinner in our family and carts me to appointments, pushes my wheelchair, brings me medicine/fluids/cats when I can’t leave my bed, and has to pick up the slack on my ever-increasing list of things I can no longer do. This is the case for many people who have spouses who are ill.

The acceptance train is a hard one to catch, but we all have to board it someday, the sooner the better. I don’t mind if anyone wants to say this and discuss their struggles as long as it comes from a place of compassion.

8.   “I support you/ care about you/ love you unconditionally”

This may be a no-brainer. We all need to know we are loved and valued but when you are dealing with chronic illness, this is especially true. I often feel guilt and frustration about my limitations and the efforts those around me have to make to help me get through life. Hearing these words can be a reminder to your loved one that despite the struggles you still love them and care about them unconditionally.

9.   “We got this”

I have learned that managing and living with illness requires a team effort. It’s a collective enterprise that requires the work of your loved one, family, friends, doctors. Many people live a fantasy that they are independent and don’t rely on an interdependent network of support to get through each day. Before I got ill, I did for sure. When you are chronically ill, you can no longer live that fantasy. We have to carry each other. 

We are stronger together and we can face the challenges of life as a team. 

We got this. 

The Beginning, Again

I am experimenting with narrative in this post. One of my goals with this blog is to mentally fit the pieces of the strange adventure I have been on together. This is an extension of my very first post and a look at how this crazy ride started:

“You didn’t have a heart attack. You can go back to school.”

Those words came after many appointments and discussions with Dr. Z, who had offered an embrace after every visit while promising his support. He was a young, handsome doctor who wore a sharp blazer instead of scrubs or the conventional khakis. His office staff always looked ready to go to a club after work. I was convinced the girl who prepared the EKG for me every visit was younger than my college students.

I had been seeing this doctor for months and had just informed him that despite the many times he answered my litany of symptoms with comforting suggestions that everything I was experiencing was “stress,” I had no choice but to leave my PhD program and stop working. I was unable to keep food in my body, I couldn’t safely drive because of the dizziness, my heart rate never dropped below 100 bpm, I was unable to stand, I had lost 15% of my body weight. What other choice did I have? I wanted to believe him, but these were the facts.

I actually initially liked Dr. Z. I made my first appointment with him out of pure desperation.

My husband and I moved to Nevada in 2010 so that I could start working on a PhD in literature, a goal I had been working towards for many years. The winter of 2010 had record snows in Nevada, and January of 2011 started out icy and cold. My husband and I adapted well to living in the snow and I actually liked when it was below 10 degrees in the morning and I made the long trek to the department to teach my freshman composition classes. The cold wrapped around me like a frosty breath, and the snow muffled the grimy bustle of Reno. It was almost beautiful.

I was working toward my second year as a PhD student in 2011, a time to really choose a path that would define my academic career. But something was wrong. I could feel it in my bones that something was wrong.

Constant headaches. Entire nights without sleeping. GI issues making it impossible to leave the house. Exhausted. Dizzy. Working on a PhD will bring out or aggravate any latent health issues. It will wear your soul thin. I was starting to think what I was experiencing went beyond the stress of the academic life.

I was an old, injured gymnast at 14 and then was seriously injured in a car accident at 21. When I was 25, I was diagnosed with fibromyalgia and started living with constant migraines. I’ve never been in the greatest health, but I always managed to never let it hold me back.

But this felt different.

I was trying to push it all to the side and keep my head above water. One memory stands out in the blur of early 2011. My university hosted a group of famous scholars, and all the grad students were gathering to attend the talks and meet them. I remember standing at the desk I shared with two other TAs in the basement of the English department unable to focus on anything because everything was spinning. I knew I was going to throw up from the dizziness. I could hazily detect someone in the background asking “Are you coming?” I walked the half mile back to my car and drove home.

I had to miss some of the classes I was taking and some I was teaching. All my life, I never called in sick to work. Never. No matter what I was experiencing, work was always a top priority. This wasn’t me.

Another memory stands out. Because all events in graduate school and academia seem to revolve around alcohol, one of my professors decided to hold our last class meeting in May at a restaurant so everyone could get wasted. I showed up but didn’t drink. I remember sitting across from my friend and trying to laugh and joke with her but the whole room was spinning. My professor had a drink that was an entire bowl of liquor, designed for multiple people. He finished it by himself and ordered another. Most of the grad students left the restaurant to walk to everyone’s favorite bar to continue the party. I had my husband pick me up because I didn’t think I could drive from the dizziness.

Two weeks after this I ended up in the hospital. As is often the case in my life since getting ill, the semester ended and I had collapsed into a puddle of sickness. My husband went to bed early one night because he worked at 4 AM every day, and I walked into our bedroom shaking and weak. I told him something was wrong. He felt my pulse and called his mother who is a nurse. We drove to the hospital.

They clocked my pulse at 175 when we got there. If you ever don’t want to endure the long wait at an ER, show up with a raging pulse. You’ll be fast tracked to a room and a CT scan.

The young doctor came into my room and I explained the bizarre symptoms I had been having, and he handed me an Ativan. I was dehydrated from the constant diarrhea. After an IV and hours of resting, he looked me in the eyes and said, “You had a panic attack. You can go home.” I know now that even with a diagnosis, many POTS patients are often told they are having a “panic attack” by ER staff. I didn’t know any better then.

Days after this, I couldn’t lie on my back anymore in bed because my heart was pounding so hard that I couldn’t comfortably sleep. This is normal, right? No, this isn’t normal. But, am I wrong? After leaving California, I had neglected to make appointments with new doctors unless I desperately needed medication refills. When you’re taking three classes, teaching two, and working seven days a week to keep up, there is no time for managing your health. I let it slide. I was busy.

After the ER visit, I made an appointment with a primary doctor everyone recommended, Dr. Z. I wanted to see some specialists. He instead told me, “I can manage this. Don’t worry about it.” I wanted to believe him.

The medication I had been taking for years for migraine prevention was causing tachycardia suddenly. He had me stop that med and start another, which also made my tachycardia much worse. After many visits where my vitals were always anything but normal, he finally referred me to a cardiologist.

This cardiologist had an unpronounceable name. I checked in to his office and as I sat down I saw the office attendant lean over and comment to another attendant about how young I was. Being the youngest person in the waiting room to see specialists is common now, but it terrified me then. That cardiologist told me “it’s just stress. Stop drinking coffee.” You can’t stop coffee if you’re a grad student. That’s a death sentence. I would wake up in the morning that summer and take my pulse. The monitor would show 140 bpm and I would roll my eyes and then drive to Starbucks.

He ordered an echocardiogram, which was my first experience with disturbing medical tests. A nurse pressed sound waves into my chest and I stared at a monitor inches from my face that intimately and vividly displayed my beating heart and veins. It was like an initiation ceremony into the many medical tests over these years and the ever-constant reminder of my own mortality and vulnerability. It was the beginning of a glamorous life as a lab rat. I have a poem about it here.

There were some good times during this mess. That summer, my husband and I got a few hikes in, including one in Tahoe with some close friends. One of them lost his glasses in Lake Tahoe and we spent the day searching the murky waters looking for them while laughing. I was teaching a summer class with underprivileged high school students who wanted to earn college credit early. I was ill and wearing a heart monitor under my clothes while I was teaching, but that is still one of my favorite classes I’ve ever taught— probably the most rewarding. My husband and I saw the re-release of The Lord of the Rings in the theater. In a packed theater of fellow nerds and grown men in homemade chain mail, we communally cried through every bit of it.

These happy memories are filled with color and vibrancy that contrast the other memories of that year that are a grey haze. I didn’t know then that my days of hiking were coming to an end.

Summer ended, fall semester started, and I pushed all the health stuff to the side so I could survive another semester. Yet, by the end of October I had gone from 135 pounds to 116. I was unrecognizable. Handfuls of hair were coming out of my head. I was still trying to show up to my classes and to teach. All of my time was reserved for that, so I couldn’t find time to fit any appointments with doctors in. I felt powerless, hurtling toward disaster.

I emailed the head of the grad program on November 2^nd to tell her I had to go on leave. My psychiatrist, the only doctor who took me seriously then, gave me the note so I could go on leave. I should be sending her flowers every month still.

I won’t lie and say I enjoyed working on the PhD in literature. In fact, I had already been contemplating leaving.  I had been initiated into a world that was incongruent with my real desires. I’ll reserve my true criticisms of it to say only that in that world you pledge your fealty to an academic plutocracy who throw mere crumbs of glory for every ounce of 70 hour work weeks and neglected relationships you put in. That glory becomes something of a drug, a drive for validation. I learned the real meaning of “diminished returns” doing that work. There were many times I wanted to stand up and have a Fiona Apple moment, proclaiming that "this world is bullshit."

But I got out. I feel like a cult victim sometimes looking back, thinking “what kind of screwed up mind game was that? What were those bizarre rituals? How many sacrifices did I participate in?” Some people are well-suited to academia. More power to them. All I wanted was to get back to my real love—teaching—where I could see the fruits of my work in my student’s lives, without the distraction of pretending to be a scholar.

After I finished my MA in 2008, I taught as an adjunct at two community colleges. My plan was to take time off and apply to PhD programs with the ultimate goal of teaching literature at a state college, where I could bask in the splendor of teaching and research. I was a bright-eyed, newly-minted MA thrown full force into the life of adjunct. I learned that I had a real passion for working with developmental classes (below college-level). I enjoyed teaching despite the grueling life of an adjunct and driving 150 miles a week commuting between the colleges. I had a new plan: get a PhD and teach full time at a community college. That was my dream scenario.

So I focused on studying for the GREs and preparing applications as I was teaching. My entire life, I have always been preparing for what’s next. I have never felt wholly invested in anything because I was preparing for some determined, carefully planned future. If illness has taught me anything, it has taught me that a “carefully planned future” is an illusion. Life makes other plans and you have to roll with it, but I hadn’t learned that lesson yet.

I look back at this time between 2006-2010 as some of the best years of my life, but I regret not being more present. I had a rewarding job, my husband and I were hiking all the time, I was surrounded by my friends and family, I was playing music and performing regularly. But I relented to the nagging “what else?” that looped in my brain. Ambition is a vehicle that delivers you to your goals but it can also blind you to a fulfilling present. I had no idea that my days of enjoying those passions were going to violently end. If I had known, I wouldn’t have wasted the last of my pre-sick days in grad school. Some of my bitterness about grad school stems from this hindsight view, but I’ve tried to learn lessons from lamenting lost time.

When I left the PhD program in November 2011, I started an arduous journey through the absurd labyrinth of the medical system. I rejected my primary and my cardiologist’s assessment that all I was experiencing was “stress.” I started a two year cycle of going from specialist to specialist looking for answers.

In total, I have seen four cardiologists, three neurologists, three gastroenterologists, two endocrinologists, two dermatologists, one rheumatologist, two primary doctors, two psychiatrists, two psychologists. There’s more, but that’s what I can remember at least. I should turn this list into a “12 days of Christmas” parody and call it the “12 Referrals of Illness.” I would have 3-5 appointments a week during this time, which was grueling while I was ill.

One of the buildings I had to visit regularly for appointments made me uncomfortable. Even the sight of it right now would make me shudder. Walking into it, you would suspect the building was surrounded by Dementors. I was always the youngest patient in that building by at least 30 years. One day while riding the elevator up to the second floor, a young UPS driver got into the elevator with me. As the door closed, he leaned over and said, “coming here always makes me really scared to get old.” I was thinking the exact same thing at that moment. My husband swears he had a zombie encounter in one of the waiting rooms while I was in an appointment. I had entered a disturbing world many young people never see.

Despite the constant appointments, endless vials of blood work, and co-pays, I was getting nowhere. Some doctors recognized the extent of my health issues but my symptoms were outside of their expertise. Shuffle her off to another doctor. Some doctors continued to dismiss me.

I saw an endocrinologist in the Dementor building who patted my head and said “you’re fine.” Before he walked out of the room, he listened to my heart.

“Huh,” he said. “That’s strange. The heart should accelerate when you inhale but yours is over accelerating. This may be an autonomic issue.” This was the first time I had ever heard that word. Again, this was outside his expertise. He sent me on my way.

My rheumatologist convinced me to see another cardiologist because she thought my excessive heart rate was still concerning. When I walked into this cardiologist’s office, my pulse was 135 and my blood pressure was 70/50. I was trying to hold onto consciousness when I drove there on a snowy, icy day. He mentioned the word “POTS.” He told me to stop taking all of the drugs my primary had me take because they were making me worse. Yet, when I saw Dr. Z again he tried to convince me to stay on them.  I stopped taking orders from him.

Not long after I left school, I had convinced my husband to move back to California. He thrived in Nevada. He was shooting in the desert every other day, and he loved his job and the people he worked with. But every time I left my house, I felt a blanket of failure wrap around me. I had to get out. I wanted to go home, rest, recover, and reclaim my life. We made a deal and my husband started the process of transferring back to California. We still discuss moving back to Nevada because he loved it so much.

We moved back home in March 2012. I was happy to leave Dr. Z. To this day, my husband swears if he ever ran into him in public he would physically harm him. Someday when I write my book, I want to mail him a signed copy. His lack of care (literal and figurative) set me back in my diagnosis at least a year. Unfortunately, I have learned that many Dysautonomia patients have a “Dr. Z” who dismissed them, made them feel crazy, and were an obstacle on their road to diagnosis. I hope that someday, with more awareness, this will no longer be a typical story.

In my youth, I liked to dream. If I had to ever go hungry, I swear I could subsist on my idealism alone. That idealism was the driving force for most of my decisions in life. Over the last few years, those possibilities and the vastness of those dreams have narrowed and narrowed—until now I can fit them in the small of my hand. Yet, life can take you in unpredictable directions sometimes. The strength you obtain from surviving that unpredictability is worth every battle scar in the end. 

The story doesn’t end here obviously. The adventures continued when we moved back to California in 2012. The road to diagnosis is long and winding (and I’m still on it). That story is forthcoming.

How to Help A Friend or Loved One with Dysautonomia (Or Any Chronic Illness)

One of my goals while being on leave was to post more regularly but I hit a really bad patch the last few weeks and didn’t get this post up sooner. But I’m working on getting back to the upswing and writing, walking a bit, and singing to my cats regularly again. My BFF Carrie Anne recommended this topic to me, and I thank her for it. This post is in honor and in celebration of Dysautonomia Awareness Month. 

Although Dysautonomia is an invisible illness, living with the condition has very real ramifications in the lives of patients and their friends and loved ones. The illness can be so devastating that some are unable to do normal activities and have to rely on a caregiver. Everyone needs support in their lives, but for those who are disabled and/or chronically ill, that support becomes vital. 

For many people, it is difficult to ask for help. In American culture, we are taught to value independence and self-reliance. I have found that many who cope with chronic illness once had lives filled with ambition, over-achievement, and self-determination, myself included. When suddenly you are confronted with a life of dependence and survival, there is grief and frustration, which can be difficult to communicate to others. Yet, having a support network that you can trust and rely on can make all the difference for Dysautonomia patients.

Many may think that helping a friend with chronic illness or disability means helping them perform tasks. What your friend or loved one really needs is often intangible. I decided to ask some of the online Dysautonomia/POTS groups I am on about this topic to get their feedback and almost everyone responded with the intangible forms of support. Whether you are a caregiver, a loved one, or a friend of someone with Dysautonomia, I hope you find this useful:

Understanding

Almost every person who responded to my question included this word. Understanding takes many forms, and I believe for many of those who responded it meant trust—trust that even though the illness is invisible, the disabling symptoms are very real. Your friend/loved one is likely dealing with constant dizziness, fatigue, brain fog, nausea, difficulty standing, difficulty breathing, GI symptoms, fainting, weakness, and obstacles performing simple tasks like cooking, driving, showering, or bending over. Their system is on a constant roller coaster ride of fluctuating blood pressure and heart rate because their body is no longer able to self-regulate automatic functions. Even if you cannot visibly see these symptoms, trust that they are experiencing them. They are dealing with constant frustration because of these symptoms and just want someone to understand how challenging life has become.

Many patients deal with constant invalidation, particularly from the medical community. Almost every Dysautonomia patient has at some point heard “it’s all in your head” or “it’s stress.” If a loved one or friend says these words, that invalidation becomes more devastating and emotionally damaging. Imagine dealing with life-altering or even life-threatening symptoms but constantly being dismissed as just “crazy” or “attention-seeking.” The emotional cost of this is unimaginable and it adds to the magnitude of stress illness already causes.

This condition is complicated and rarely diagnosed, so many Dysautonomia patients have to fight hard to “prove” their illness constantly. It can take many years before a patient receives a complete diagnosis. When a loved one or friend just says the words “I believe you,” all of that stress and invalidation washes away. He or she can now be completely honest and authentic with you. It is a true gift. You can even research Dysautonomia, their subset of Dysautonomia, and even their other conditions to gain a better understanding of the symptoms, prognosis, and treatment.

  

 Patience

Many who responded also mentioned this word. I would list this as my number one desired form of support. Your friend/loved one’s life has been completely altered by this condition. They are often grieving their former life and trying to figure out how to continue to live a full or half-full life while ill and disabled. This means they are unable to do what they once could. This could be true in terms of work, social life, hobbies, family obligations, household chores, etc. This illness can alter every aspect of a person’s life. They need your patience because their capacity to do these things has diminished. They may miss family functions or have to get accommodations at work, and they need your patience and understanding that they would rather be fully present in all aspects of life. They are courageously living life and putting on a brave face.

For me, once I became ill I realized how much I had taken for granted in life in terms of what I was able to do. Going to the store wasn’t a massive undertaking. Trying to clean my house didn’t take all day because of constantly having to rest. I didn’t live most of my life on the couch or in bed. Whatever the severity of the illness your friend or loved experiences, they can no longer take participation in life for granted and they need your patience as they try to still participate despite the physical obstacles. Your friend or loved one can be relatively symptom free for an hour or a day and then suddenly bed-ridden. There is often no rhyme or reason, so they need your patience as they navigate the ups and downs of the illness.

Communication

Communication is essential in any relationship, but it takes on new meaning when your friend or loved one is ill. Last week was one of the worst weeks I’ve ever had and by Friday I needed to go the hospital because I was having difficulty breathing and was unable to walk just a few feet. My husband and I discussed whether it was really worth it to go to the ER or not. We weighed the options together and ultimately decided it was not. These types of communications are typical for caregivers and Dysautonomia patients. Sometimes you are faced with very difficult choices because the cost of this illness is paid out financially, emotionally, and physically. Being able to communicate with each other about these choices and the daily struggles of life can make them more manageable because you can tackle them as a team.

National Public Radio recently did a study on stress and the sources of stress, and they found that the highest forms of stress are related to health. What this data doesn’t state is that chronic illness and poor health can be stressful for all parties involved, not just the patient. Caregivers in particular deal with a lot of pressure and stress. I am no professional, but it may be self-evident that communicating with each other about the challenges of dealing with illness could help alleviate this stress.

There’s an undercurrent of guilt when illness takes over your life because how much it can affect others. I often feel the need to apologize to everyone all of the time. If patients and their loved ones can communicate about their challenges, perhaps the emotional and mental strain of illness can be assuaged for all parties. Dysautonomia patients can communicate their limitations and capabilities in terms of housework or what they will need at a social function so that others can help them. Suffering in silence is not a solution. Listen to your loved one to understand what their needs are and this could limit the frustration that often comes with an invisible illness.

 

      Support

Support comes in many forms, and your friend or loved one needs your support. Because some patients are home-bound or are very limited in their activities, they may not get to see friends or family very often anymore. Stopping by their house or calling, emailing, texting to just ask “how are you doing?” or say something funny can really brighten their day.

This illness can be isolating. Many patients never meet anyone else in person who has the same condition and leaving the house is challenging and exhausting. Feeling alone and misunderstood is common. You can check in once in awhile with your loved one or friend to see how they are doing to show them that you support them and think of them. Everyone needs to know they have a cadre of people cheering in their corner, and this is especially true for those with chronic illness.

 

      Saying the right thing

I think many people are worried about saying the right thing to someone with a devastating illness, but I don’t think “the right thing” exists. I think there’s only honesty. Tell your friend or loved one that you miss them, you think of them, you hope their treatment is going well. That you wish them an endless supply of chocolate and puppy kisses. Tell them you don’t understand their condition or why it has altered their life. I only know the wrong thing to say is “I don’t believe you,” but beyond that just be honest, ask questions, and listen. Your friend or loved one probably doesn’t want more from you than that.

Caregiving and support is a two-way street. For Dysautonomia patients, I think we could read these suggestions as “how to help friends or family understand our challenges” as well. We also need to understand, be patient, communicate, be supportive, and forget about saying the right thing. If medical professionals are struggling to crack this strange condition, we can’t expect family, friends, or strangers to fully grasp it either. We’ll get through this together.

I hope I covered most of how to help your friend or loved one with Dysautonomia but feel free to suggest more

For more information on Dysautonomia, visit the Useful Links page on this blog