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! 

Learning to Breathe Again

I wrote in my last post that I was coming out of a rough patch. I’m still working my way out of it. I’m recovering from a sinus infection and things continue to get worse and worse with my family situation. But I’m working on getting my groove back. I’m working on getting back to my goal of posting at least once a week.

I’m working on showing up to appointments again too. I haven’t been to physical therapy in almost two months and the irony is, I have to rebuild my strength so I can go there and rebuild my strength. This week, I’ve been able to spend less time in bed and more time in my yard. The rest of the country is under a deep freeze and here in California, we’re worried that summer is coming way too soon. I want summer, and the brutal heat that comes with it, to take its sweet time.

I did manage to show up to an appointment a few weeks ago for pulmonary function testing. I mentioned before that I was going to do pulmonary function testing because I have this annoying problem of not being able to breathe. I’ve had difficulty breathing since the POTS started in 2011 but along with many of my other symptoms, it has worsened considerably over the last 10 months. I often wake up in the middle of the night or in the morning not breathing. I started taking Mestinon and that helps, but it hasn’t solved the problem. Thank god for this canned oxygen I bought on Amazon. It really does this trick, and especially kills the brutal chest pains that come with the difficulty breathing.

The test is called a spirometry test, and it proved, finally, that I am having trouble breathing. My neurologist suggested it to see if I maybe, possibly, probably have Myasthenia Gravis. I usually get a picture taken during tests so I can show what it looks like, but this test was over relatively quickly so you just have to imagine me sitting in my wheelchair, breathing hard into a tube, and trying to look fabulous.

I had to inhale and exhale quickly into a tube and try not to pass out. I had to do that a few times. The last one I did, I guess my brain started turning off. Once I stopped huffing my lungs out into the tube, I looked up to see my husband and the nurse wide-eyed and ready to catch me. They asked if I was ok, and I was fine. I wanted to say, “is that all you got? What’s next?” It wasn’t pleasant but it was over pretty quickly, and no one had to catch me. 

I got a copy of the results and faxed them to my neurologist. I didn’t expect him to make any comment or finally provide a diagnosis, and he didn’t. I get to add to my perennial growing list of specialists and see a pulmonologist now. I’ve always assumed the breathing problem was related to POTS and the maybe-probably-Myasthenia, but my primary doctor mentioned that perhaps it could be something else. That’s not something I’m ready to wrap my brain around.

The best part was when I looked at the results again a few weeks later and saw something I didn’t see before: A line that said “Patient’s lung age: 76.” I showed it to my husband and we had a good laugh. I guess I finally have proof that I really am young on the outside and old on the inside, like a really good fine wine or a Twinkie that’s been in a drawer for years.

It's nice to show up. The stress of the last few months has seriously affected my health and contributed to being bed-ridden for weeks. I’m relatively resilient but my body is a delicate flower. It doesn’t take much to make everything start shutting down, especially the breathing problems. I’m working on removing myself from stressful situations, staying positive, and trying to stay well. It feels selfish in some ways, but more than anything, I have to survive. I have to be able to get out of bed every day.

Being ill is a full time job that takes immense daily effort. You have to eat the right things, take the right pills at the right times, exercise enough but don’t overdo it, keep up with appointments and testing and communicating with doctors, managing symptoms, resting, and try to keep enough energy for loved ones and for yourself. Those weeks I was bedridden I got incredibly behind. I’ve written before how beneficial mindfulness is and I’m really cultivating that practice and I’ve been meditating almost every day, focusing on living in the present, breathing, and appreciating the gifts of life.

I can’t remember the last time I went out in public, but last weekend I convinced my husband to take me to the consignment store that is just down the street from where we live, one of my favorite local stores. I grabbed my walker and as soon as I walked in I saw it: a gorgeous, vintage baby grand piano. Our eyes met from across the room, and it was love. I parked the walker and never even looked at the rest of the store. I played that piano as long as I could until my energy ran out, and my wonderful husband waited patiently until I was done. I’ve been thinking about that piano every day since. I need to come up with $5k to buy it. That moment filled my heart with so much happiness that it washed away the trauma and stress of the last few weeks for awhile. It was glorious. Next time I go, I’m going to try to get a video of me playing it and I’ll share it here or on the Facebook page.

I had big plans for 2015, hoping I could navigate the chaos of life a little more, but it’s been a very rough ride so far. I still always have faith in a better tomorrow and believe that you have to wake up every day, stand strong (wearing your compression stockings), and face whatever may come. Life may knock you down and take your breath away, but remember all the times you were able to get up before that. You’ll get up again. You’ll get up every time.

Standing strong, with a little help

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.

Surviving the Holidays

 A sense of panic starts to awaken around October, as Christmas decorations start furtively replacing Halloween decorations and the realization that the holidays are upon us. When you are chronically ill, the holidays offer added stress and panic. In the online communities I’m part of, I have already noticed the anxiety levels increasing with questions like “How will I prepare a meal?” “How do I get my house ready for guests?” “What do I talk about?” etc. My anxiety about the holidays started in September. Spoonies are great at finding solutions in difficult situations. We’re professional survivors, so I think it’s safe to say that we can find solutions during the holidays as well.

Holiday gatherings and parties are taxing for anyone, but for Spoonies they are especially challenging. For me, this year will be different. I’m not working and I have become home-bound. I have been able to do less and less over the years, but this year will be all about survival. My biggest concern is the New Year’s Eve party my husband and I always have at my parents’ house every year. Throwing a party is out of the question for me at the moment so my husband will have to do most of the work unfortunately, which he understands. Sometimes, this is reality. My goal is to be able to show up for the holiday gatherings and this party. If I can accomplish that, I’ll be over the moon.

Here are some suggestions to consider for the holidays and I would love to hear if you have other suggestions:

1.  Plan Ahead
I’m sure many of you are like me: I have a very careful plan whenever I leave the house and I try to prepare for all contingencies. This may mean bringing medication, mobility aids, fluids, etc with you.  If you are going to a friend or family member’s house, you may need to discuss your needs with the host or your family members. You may need extra care during a gathering but no one will know this unless you communicate it.

Maybe you’ll have to break up your preparations over a few days because you know that trying to do it all in one day will mean you can’t enjoy yourself or you’ll end up bed-ridden. You can even make a list or a plan for yourself if that helps.

If you have to travel, have your emergency supplies on hand with you. I have a giant purse that has water, salt, meds, and protein in it at all times. Prepare for the worst and hope for the best. You know how many spoons you have so conserve and use them judiciously.

If you are spending the holiday alone, as Spoonies must do sometimes, prepare to have a restful and enjoyable day. Do something for yourself and know that spending time alone means you can celebrate on your own terms and manage your health without extra stress or pressure.

2.  “What do I say?”: Listen

I saw someone mention this and I often ask myself the same question. I’m not working, I only leave the house for appointments, I spend most of my time managing symptoms, and I’m re-watching Downton Abbey for the thousandth time. What do I have to discuss with anyone? Sometimes illness can be the elephant in the room when you are with friends and family, but it does not have to be a focal point. You only have to discuss whatever you feel comfortable with.

Although some Spoonies do not have a vibrant external life, this often strengthens a person’s internal life. Whenever I think of this exchange, I think of Emily Dickinson. We still have much to share.

It can be difficult to not feel sad or even resentful when you hear others discuss working, traveling, or exciting social lives, but holding to this negativity will never lead to happiness. These feelings can take us out of the present and make us feel worse about our quality of life. I have found a lot of joy in just listening to others discuss what they are doing and living through those experiences vicariously. I think illness has given me the gift of being a better listener and living more in the present. This can make you more compassionate as well. Share your ideas and thoughts and enjoy listening.

3. Ask for Help

This reiterates the first point. If you know that an activity or condition will sink you, ask for help. Maybe you’ll have to delegate cleaning or cooking. Maybe you’ll have to explain your dietary needs. Asking for help is anathema to my nature, but I’ve learned the hard way that every time I didn’t ask for help when I should have, I ended up not succeeding.

Don’t set yourself up for failure. You know more than anyone else what you are capable of and your limitations so communicate this. Hopefully you have people in your life you can rely on and trust so you can communicate that this time of year is especially challenging because they may not know this.

I have a very specific diet, so sometimes I bring my own food or eat before a gathering. Maybe you’ll need to bring a chair to sit in. Do whatever you have to do. It’s easy to ignore our own needs to maintain the appearance of functionality or to not create distraction, but your self-preservation is the utmost importance. Going to parties and being part of celebrations is a rare treat for many Spoonies, so do whatever you have to do to enjoy it.

I’ll be bringing a blanket to our NYE party so that I can lie down in one of my parents’ rooms throughout the party because I won’t make it otherwise. I’m also going to adjust my medication schedule and hydrate all week to see if I can last for a few hours. I’ll put on a smile and do my best to enjoy it.

4.  Celebrate

Maybe the overwhelming stress, the sight of singing Santas, and having to hear Paul McCartney’s “Simply Having a Wonderful Christmas Time” one more time is putting you over the edge, but it’s easy to lose sight of the fact that this is a time to celebrate. Find something to celebrate, whether it’s spending time with friends and family, cheating by eating food you normally wouldn’t allow yourself to eat, or getting to wear something sparkly. Carve out some celebration and enjoyment for yourself.

I thought the last two years were difficult, but this year was the most difficult year health-wise for me by far, but I feel like a warrior for surviving it. I know that I can continue to survive it. That’s worthy of celebrating.

Even if you don’t have anyone or many to celebrate with, celebrate yourself. If you can't go to a gathering, you can celebrate on your own terms. You made it through another year of battling illness with dignity and grace. Your strength is worth celebrating!

I wish you symptom-free days, chocolate, and lots of joy for your holidays. How are you going to enjoy yourself despite your illness?