Spoonie Reads: Toni Bernhard's "How to Be Sick"

I’m excited to start this new section on the blog today. I have wanted to start it for some time. Like many of you, I find the best way to understand anything that is nebulous is to read about it. What could be more absurd and confusing than illness, right? As an academic, the first place I always turn when I have questions or need context is a book. So as I read more books that relate to illness, I’ll write a post about them and try to explain how they are useful if you would like to read them. 

Many who have chronic illness—those who are newly diagnosed, undiagnosed, or diagnosed many years—have turned to Toni Bernhard’s How to be Sick: A Buddhist-Inspired GuideFor the Chronically Ill and Their Caregivers. It’s a great starting place for understanding what life with chronic illness entails and how to navigate the treacherous waters that come with it. Although Bernhard uses Buddhism as a framework for understanding illness, the text does not cover the tenets or history of Buddhism nor is it designed to convert. Buddhism is discussed as a tool for coping with illness, but it is not the focus of the book.

The book is geared specifically to those with illness and those who care for or care about anyone with an illness. You won’t find medical research or specific information about disease. The author does have Chronic Fatigue Syndrome (ME) and POTS, which I hadn’t realized until I started reading it. Yet, she makes this book accessible no matter what illness the reader may be coping with. You won’t find information about the practical, gritty concerns of illness in this book such as navigating the medical system, applying for benefits, managing specific conditions, etc. This is essentially a self-help book that borders on psychological cognitive therapy. Bernhard's intention is to help those who suffer with illness work toward acceptance and make peace with their irrevocably altered life. Using Buddhist teachings and the concept of mindfulness, she offers cognitive pathways throughout the book that are designed to help those with illness be mindful of destructive thought processes and re-orient them instead to be productive and positive.

The strength of this book is its accuracy in representing the universal experience of illness. She touches on all of the cardinal obstacles many with chronic illness will at some point face: doubt and insensitive comments from doctors and friends and family, grieving a former life, self-blame, confusion and frustration, the long road to acceptance, seeking answers when none may exist, and courageously rebuilding a life despite illness. It is the last point that is the overlaying theme of the book. No matter how resilient you are, that resilience will be tested after illness and Bernhard offers suggestions for reclaiming that resilience. 

She begins the book by stating that a basic tenet of Buddhism is that “life is suffering,” explaining that this is not a gesture toward resignation but instead acceptance that life is in constant flux. She mentions that this should be a source of strength. To understand this, she says she repeats to herself “You know this is the way it is. You were born and so are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the ways it’s happening to you.” Suffering can be used as an emancipatory concept to accept what you are experiencing and find a way to thrive and let go of the self-blame that is so common with chronic illness. Suffering as a form of strength and perseverance underpins many of her points throughout the text. 

There are a few points throughout the book that were memorable to me that I will mention, and even though I read this book a year ago, they have continued to help me with the tough emotional work of managing illness. She discusses the Buddhist idea that there is “no fixed self,” meaning that the “I” we use to understand ourselves and the world, is constantly changing. Thinking of ourselves and our bodies this way is useful for seeing our experience of illness objectively. She states, “contemplating the truth of no-fixed-self has helped me tremendously since I became chronically ill” because “what happens in life arises out of conditions, not from a ‘me’ in control.” Relinquishing this sense of control or the idea of any fixed state of being is useful on the really bad days. It can be a source of hope. She has a mantra to remind herself of this: “there is sickness here, but I am not sick.” I have repeated this on my bed-ridden days. It’s useful to remember that illness is not my identity and the experience of illness and life in general is constantly changing. The bad days and moments are transient.

Sometimes it feels like illness washes the entire world in a grey haze, but maintaining our humanity and remembering to feel joy is still essential. When I can’t do the things I want to do or be with my friends and family, I think about what Bernhard said about “cultivating joy in the joy of others.” This is a good antidote to the inevitable envy of those who are well that so many of us experience. When I can’t go to an event or leave the house, I try to feel joy that my friends are spending time with each and they are having fun. It’s difficult to do, but it always helps me get around the disappointment.

For me, the most useful point she makes is learning how to feel compassion for ourselves and our bodies. I have spent most of the years I’ve been ill punishing my body for being ill and forcing it to do things it is incapable of doing because I refused to accept my limitations. This obviously led to enormous frustration. It’s a product of guilt and self-blame. But Bernhard mentions that feeling compassion toward our own suffering is a way to surrender, accept, and cope: “When cultivating a compassionate mental state, sometimes I look for words that address the source of the suffering … I might silently say ‘It’s so hard to want to so badly not to be sick … my poor body, working so hard to feel better.” On the really bad days or when I feel like giving up, I think of these words and feel some compassion for myself instead of blaming myself for struggling to endure.

There is much more in this book that offers useful cognitive re-framing to understand and manage illness than what I mentioned here. After reading it, I did wish for more depth in terms of narrative and the application of these points, but perhaps that’s more a matter of personal taste than a deficiency in the book. I have some parallel experiences to hers, which I found so amusing that I talked to her on Twitter about it. We’re both academics, have POTS, and live in California’s Central Valley. When she mentions the embarrassing lengths she had to go to while teaching and being severely ill, I had a visceral connection with her. I had to do the same thing.

This book is educational in learning how to do more than just exist and survive with illness. It can help you on your path of learning to live well and fully while ill.

This book has been so successful that she has written multiple sequels to it that focus on other topics. I recommend this text in your studies of chronic illness and managing your condition or even understanding how a loved one lives with illness. You can find her website with a list of her books at www.tonibernhard.com.

Cheers and happy reading! 

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. 

Why Getting a Diagnosis Matters

I’ve been thinking a lot about why getting a diagnosis matters lately. Because many with Dysautonomia or other rarely diagnosed and invisible illnesses must go through months to years of appointments and testing to get a diagnosis, I have often wondered why we fight for one despite the constant obstacles and hurdles to obtain it. For many illnesses, especially rare and complicated ones, time to diagnosis is typically six years or more.

In 2011, I spent a year going through endless appointments and testing before I finally got diagnosed with POTS. I’ve spent most of the time since then going through endless appointments and testing to figure out what else is going wrong. Comorbities are common for Dysautonomia patients and they can spend years trying to obtain differential diagnoses. Never expect life to be easy, that's for sure!

I’ve mentioned before that about a year and a half ago I suddenly started having difficulty walking. I’ve gone from using a cane, to a walker, to now having to use my wheelchair if I leave house in that short amount of time. I am rarely able to leave the house at this point. Leaving the house is overrated anyway. Except, I miss it.

When I mentioned my walking issue to my doctor’s nurse practitioner when it started she basically told me I was imagining it. Invalidation all over again. So I tried to believe that for many months. But then I couldn’t get around and had to get a cane. I was continuing to lose my mobility rapidly. Hey, every 30 something goes through that difficult period of trying to figure out life while losing their mobility, right? Well, maybe not. I wasn't imagining this.

Having just one random illness no one has heard of is not a thing

I finally saw my neurologist this year. It had been two years between visits (the dude is popular and busy), and I told him what I was experiencing along with other disabling symptoms, he gave me a list of tests I would need to do. My heart sank. He was taking me more seriously but I knew all of those tests and appointments meant there would be no answers for at least another year. That was over seven months ago. I have only gotten progressively worse since then. My couch has a permanent Stefani shaped dent in it. 

While I fought to get the POTS diagnosis, I never dreamed of giving up. I'm in my fourth year of seeking a more complete diagnosis. The drive to give up has been surfacing from my subconscious, but that's not in my nature.

In one of the blood tests, I tested positive for an antibody for Myasthenia Gravis. Loss of mobility, weakness, difficulty breathing, and fatigue are signs of this autoimmune condition. In two weeks I do another test for MG. Maybe a diagnosis? My doctor had me start a medication last week that is used to treat this illness. But still, no official diagnosis. After all this time, will I finally know? But this led me to question why does a diagnosis matter? I am technically already being treated for this and have been learning how to cope with it, so why does the label matter?

Not many people want to be pigeon-holed and labeled. When you are desperately ill, that label is a like a trophy, engraved with the words "I Was Right!" Some never get a complete diagnosis and must suffer the costs of uncertainty long-term, but many of these patients still search for a label for their suffering. A label of an official diagnosis can matter for many reasons.

   Official Recognition and Documentation

Insurance companies and the medical system seem to operate in a very black and white world although there are some of us who live permanently in the grey area in between. There is nothing cut and dry about rare, complex conditions. Yet, a label and diagnosis fits into that tiny square in many medical forms titled “medical conditions" (good luck fitting more than one condition in that square). Having to list a grab bag of symptoms doesn’t seem to hold much weight in their world. Sometimes a grab bag of symptoms leads doctors or medical professionals to instead give a patient a psychiatric label such as “depressed” or “anxiety.” It’s easier than admitting they don’t know sometimes or investigating further. The irony is that depression and anxiety often are an effect of disabling symptoms met with invalidation, not the cause.

This is unfortunately incredibly common for many Dysautonomia patients. There can be serious ramifications from this invalidation. A lack of diagnosis could lead to patients not getting approved for a needed test or treatment option. It could mean a patient cannot get needed accommodations at work. It could impede accessibility to essential services for the chronically ill and disabled.

For those who are so disabled that they are unable to go to work or attend school, an official diagnosis could be a life line. This could help them qualify for disability or other types of assistance. For many, a diagnosis is essential for these practical concerns.

Often when you are chronically ill, you will encounter many doctors who do not know your medical history, you will have to fill out stacks of paperwork, and you will need to communicate to the medically uninitiated (such as employers, family members, etc) your needs. A diagnosis provides a concise explanation. 

Truth really is stranger than fiction. You can't make this stuff up. There’s nothing quite like having an entire Wikipedia page dedicated to your rare condition that you can direct them to when you have a diagnosis. The label leads to vital information and resources. It provides you with a prognosis and information to understand your body. A grab bag of symptoms rarely does. That leads to fruitless internet searches and typing into Google "am I dying?" The label can matter.

 

     Validation (Hey, I’m not just crazy!)

Finally leaving the inhospitable world of uncertainty behind for the more ordered, life-affirming nirvana of diagnosis gives patients validation, especially if they have been told they are wrong by many doctors. It lets patients at least take a break from the endless hamster wheel of diagnosis. This has practical financial, legal, and bureaucratic concerns as I mentioned above, but it also assuages the psyche of those who are desperately ill but have been denied proper care and treatment under the label of mental illness.

When I was finally diagnosed with POTS, I wanted to sing in the streets. Then I wanted to send the primary doctor I had who told me over and over “you’re just stressed” and ended up making me worse a flaming bag of dog poop. Ok, I won’t do that but I still think about it.

After being told by so many doctors that I was wrong, I was finally right. When you get a diagnosis, it's like reading a prequel to your life. The plot holes, disjointed timelines, and weird flashbacks of your story start to make sense.  I have learned that sometimes you will still encounter invalidation and continue to have to “prove” you are ill, yet you can wield a clinical diagnosis like a weapon against these forces. You aren’t wrong. You have proof. The label can matter. 

     Treatment

Perhaps most importantly, a diagnosis can lead to treatment options where there were none before. As with most rare conditions, no specific drug has been created to treat Dysautonomia and POTS as a whole, but there are drugs that treat symptoms such as Midodrine. Drugs are typically used off-label for Dysautonomia and POTS, such as Florinef (which was created for Addison’s Disease). The FDA did recently approve Droxidopa, an Orthostatic Hypotension drug.

It is difficult to treat a patient without a specific diagnosis, so finally getting that label gives a patient some options as opposed to few or none. Even with a probable diagnosis, you can have treatment options. For example, since my doctor suspects Myasthenia Gravis, I have started taking Mestonin and started physical therapy. Proper treatment can provide hope and can lead to a better quality of life. The label can matter.

 

 ***

HuffingtonPost posted an article listing other, innovative avenues for patients with complex conditions to pursue when you are trapped on the hamster wheel of diagnosis. POTS is even mentioned in the article, how about that! Depending on what happens over the next few months, I may pursue #3. 

I have been telling myself over the past year that perhaps a diagnosis doesn’t matter, but that’s the drive to give up talking. It does matter. The process to get there is painstaking to say the least but I have written before that there are ways to navigate it, which is here. 

Even if I also become one of those who must suffer a label-less existence, I know I'm not wrong, and that's what matters the most.

My last trip to Stanford Hospital. Keeping up the good fight

Why does getting a diagnosis matter or not matter to you?

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