I’m just starting to come out of a fairly substantial crash – again! Although I’m usually pretty good now at staying within my energy envelope, I allowed myself to get complacent about my recent high energy levels and then a couple of unexpected events piled on top of a difficult time hormonally and BOOM! Or should I say BUST!

Like anybody with an illness like ME/CFS, Fibromyalgia or Lyme disease, I’m rather familiar with this kind of setback. Over many years of experience with ME/CFS, I’ve developed a comfortable and effective strategy for dealing with it:

• I let go of everything that I can and imagine myself as being “off sick.” This isn’t everyday chronic illness; it’s an acute episode and needs to be treated differently from the everyday.
• I rest as much as I can.
• I accept the low mood that always accompanies this kind of crash, putting it down to changes in brain chemistry. I do my best to avoid finding any other meaning for these low feelings. I let go of any comparisons that crop up into my head and repeat the mantra, “It is as it is.” I let go of any thoughts about what this crash might mean for the future, telling myself I’m too foggy and skewed to make any objective computations; there’s no point in thinking about things until the skewy fog clears.
• I allow myself to let go of any self-help activities if the only way I can consider doing them is by beating myself up with a stick. I make a decision  to treat myself with kindness; even if I can’t feel that kindness, I know what it looks like, so I do it.
• I do my best to make myself as comfortable as possible while I wait for the worst to pass.
• I trust that the worst will pass and a time will come when I have enough energy to easily start investing in things that will move me forward again.

But even when I know that this is a really effective strategy and that I’ve employed it to good effect over and over again, I still get inundated with the nagging doubts!

“Wouldn’t it be better for you if you did a bit of yoga now?”

“Don’t you think you should set your alarm? It will help you regulate your sleep pattern.”

“What if you’re making yourself worse by not moving around enough?”

“Maybe a short walk is just what you need right now.”

Now, all those thoughts can be really helpful when I’m not in a crash, but the feeling of being bullied in the midst of a crash is not helpful. When I sense that what’s being suggested is the last thing I feel like doing right now and instead recognize the pressure I feel as a result of these thoughts, I realize I am being a bully – to myself.

When I recognize my reluctance to cede to this pressurized self-bullying, I remind myself that there is no point in just fighting back. That kind of resistance simply brings more tension into my body – an extra load for it to deal with. First of all, I have to accept and understand that these thoughts are trying to help. It’s understandable to worry about whether we’re doing the right thing for our health when we’ve never been given the formula! Chronic illness, particularly its acute flares, sucks! It’s understandable that we have a strong drive to move away from it. It’s understandable to feel worried about whether or not we’re doing the right thing.

Once I’ve shown myself acceptance and compassion for the drive that is pressuring me, I remind myself that pressure isn’t helpful right now, that in order to get to a place where I have enough energy to invest in self-help, what I most need is to let go of all demands and find a state of peace in which my energy can be directed towards healing. Without the compassionate acknowledgement that the pressured voice is trying help, I just get drawn into an energy draining internal battle:

“You should be doing yoga; no, you need peaceful rest; but yoga will help; but I don’t feel like it; but you’ll never move forward if you don’t invest in it; but I’ve got nothing to invest…”

When I can step back and acknowledge that the pressure is trying to help, I can address it gently: “I know it’s difficult to know what’s best and I know you’re trying to help, but I’m going to choose to trust that by letting go and allowing myself to be at peace with not ‘doing,’ I’ll save the energy that gets wasted being in tension and get to the point when I have that energy to invest sooner.”

Having a strategy for coping with a setback helps, but it’s so important to remember the importance of acceptance and self-compassion to help that strategy run smoothly!

This article was first published on ProHealth.com on April 30, 2018 and was updated on July 7, 2021.

Julie Holliday is a holistic life coach and writer committed to helping people overcome their challenges and live a great life despite chronic illness. Writing as the ME/CFS Self-Help Guru, Julie shares tips on her weekly blog. You can also follow her on Twitter and Facebook.

Books can provide a lot of things to readers: comfort, information, inspiration, and just plain pleasure! Cognitive dysfunction (aka brain fog) makes reading difficult or impossible for some with ME/CFS, fibromyalgia, and tick-borne infections like Lyme disease, but there are some ways around that. Whether you have given up reading due to these difficulties or can still enjoy reading, there are many ways that books can bring joy into your life.

I have been an avid reader since the days of Dr. Seuss and Nancy Drew. When I got ME/CFS 15 years ago, books became a huge comfort to me, a way to escape the constant struggles in my daily life. They were one of the few joys left for me during my darkest years.

I realized that despite all of the restrictions in my life, I could still read (and I was grateful for that, knowing some can’t). I built on that love of reading with book groups, a blog about books, and online interactions with other readers. All of that is now a big part of my life and something that brings me tremendous joy.

Here are some ways that books can bring you joy and enrich your life, too:

Try Audio Books

Many people with chronic illness who can no longer read on their own find that they can still enjoy audio books. With eyes closed and reclining comfortably, you may be able to better take in information by listening rather than trying to translate written words on a page with symptoms of cognitive dysfunction. You can also enjoy audio books with a friend, partner, or family member.

Though there are still some audio books on CDs, most are now digital downloads. Simply download a book onto your iPod, phone, or other device and start listening. Try downloading audio books from sources like Audible.com, Audiobooks.com, and Audiobookstore.com. With these services, you either purchase a monthly subscription or buy individual audio books, and many of them offer your first download(s) for free. For more free audio books, check out your library (most still offer audios on CD as well as digital downloads) or websites like Loyalbooks.com, and Librivox.org. Audiobooksync.com offers two free audiobooks each week throughout the summer every year.

Here are some outstanding audio books you might enjoy:

• Lillian Boxfish Takes a Walk by Katharine Rooney – Based on a real-life woman, this novel takes place on New Year’s Eve 1984, as 85-year old Lillian walks all over Manhattan and remembers her long life there.
• Celine by Peter Heller – An intriguing mystery starring 69-year old Celine, a PI specializing in reuniting families, who carries her own family secrets.
• Anne Frank Remembered: The Story of the Woman Who Helped to Hide the Frank Family by Miep Gies with Alison Leslie Gold – The narrator makes you feel as if you are hearing this riveting story first-hand in this moving memoir.
• Rebecca by Daphne Du Maurier – This classic Gothic novel is wonderful on audio, with the narrator bringing out the creepy, mysterious vibe that makes this story so compelling. This was one of my free audio downloads from SYNC (as was Anne Frank Remembered).

Try Young Adult or Middle-Grade Books

If cognitive dysfunction prevents you from following complex narratives, then consider books written for teens/young adults (YA) or middle-grade (MG) readers. These books are often easier to follow and shorter, but many of them are just as engaging. Some to try (all of these are excellent on audio):

• Unbecoming by Jenny Downham – YA novel with incredible emotional depth, as three generations of women (a teen girl, her mother, and her grandmother who has dementia) struggle with their identities and their relationships with each other.
• Pax by Sara Pennypacker – MG novel about a fox raised by a boy and how he struggles to find his friend when they are separated. Warm with plenty of suspense and adventure.
• The Big Dark by Rodman Philbrick – MG novel for those who enjoy post-apocalyptic fiction. A massive power outage affects the entire world as a young boy in New Hampshire copes with his community’s fear and anger and tries to save his mother.
• The Deadly Sister by Eliot Schrefer – For mystery and thriller fans, this YA novel is fast-paced with plenty of surprise twists and also looks at what it means to be family.
• Chasing Lincoln’s Killer by James L. Swanson – If you prefer nonfiction, there are often MG or YA versions of popular adult nonfiction titles, like this YA version of Swanson’s best-selling Manhunt: The 12-Day Chase for Lincoln’s Killer. Shorter and simpler than the adult book, it is still a compelling, fascinating story.

Read for Inspiration

Books can also be a great source of inspiration, especially when you are struggling with the realities of chronic illness. Here are some wonderful books to turn to for inspiration, in either print or on audio:

• The Anatomy of Hope: How People Prevail in the Face of Illness by Dr. Jerome Groopman – This book helped me immensely in the early days of my illness. I also gave it to my father when he was diagnosed with cancer.
• How To Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard – Toni, who has ME/CFS, has written three wonderful and inspirational books that apply Buddhist principles to life with chronic illness. This mix of personal experience and common-sense advice is wonderfully supportive and helpful.
• Always Looking Up: The Adventures of an Incurable Optimist by Michael J. Fox – I loved this uplifting memoir about Fox’s life with Parkinson’s disease, as well as life in general: marriage, kids, loss, and more. The audio is read by the author and made me both laugh out loud and tear up. His first memoir, Lucky Man, about his diagnosis and early years with Parkinson’s, is also excellent.
• The Sound of a Wild Snail Eating by Elisabeth Tova Bailey – a memoir written by a woman bedridden with severe ME/CFS, this slim book describes her daily life and the life of a small snail in a potted plant by her bedside. Sounds a bit strange, but it is beautifully written, fascinating, and inspiring.

Join a Book Group, in Person or Online

About five years into my illness, I joined my neighborhood book group. I wasn’t sure I had the stamina for it, but I loved to read and was desperate for some social interaction. I later joined another book group at a local Unitarian church. I still belong to both of those groups, and the experience has enriched my life. I have enjoyed books that I never would have chosen on my own. I also love being able to discuss a book after I read it.

If you can’t manage an in-person book club, try one online. I started my own online family book group a few years ago, with my far-flung cousins and aunts. We use a Facebook group and take turns choosing the next book. It can be challenging to keep discussion going online, but it can work with a little effort. I also belong to an ME/CFS Book Club on Facebook that is very low-key – you read the books you are able to and take part in discussions when you can.

To find a local book group, check with friends, family, neighbors, and your local libraries, bookstores, and churches. If you can’t find one, start your own! Online: try searching for ‘online book group’ (or club) and ask friends and family, as well as people with your illness that you interact with online. I have seen some book discussions within chronic illness discussion forums, as well as on Facebook and Twitter.

Use Books to Connect with Others

You don’t have to belong to a book group to connect with other people through books. Visit book blogs online and leave comments. Post on Facebook “What Are You Reading?” to engage your friends and family in discussions about books. Join Goodreads or Litsy to see what others are reading. On Twitter, use the hashtag #FridayReads to post what you are reading.

In real life, ask your friends and family what they are reading and tell them about books you’ve enjoyed. Books provide a way to connect with and relate to healthy people. Read aloud to a child in your life (even if they are old enough to read on their own) to get closer and build happy memories together – or ask them to read to you!

With all the limitations in a life of chronic illness, you can still find joy in books and in talking to others about what they are reading. If you are unable to read the books you used to enjoy, try audio books and/or books written for a younger audience. Use your love of reading to connect with others, and your life will be enriched by the books themselves and the relationships you build and strengthen.

This article was first published on ProHealth.com on July 13, 2017 and was updated on June 30, 2021.

What books would you add to the list? Let us know in the comments below.

Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for more than 20 years and also has Lyme disease. Both of her sons also got ME/CFS , but one is now fully recovered after 10 years of illness and the other was in college, still with ME/CFS plus three tick-borne infections, when this article first posted. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow her on Twitter at @livewithmecfs.

by Katarina Zulak

Looking back on a year of quarantining, I had the surprising realization that fewer medical appointments and procedures had improved my quality of life significantly. It turns out that having quarterly nerve block surgeries and knee injections, biweekly physiotherapy and acupuncture appointments, and semi-regular checkups with my pain specialist, GP, OB/GYN, and naturopath were more overwhelming than they were healing! In addition, the daily burden of my self-management treatment regimen, which included supplements, stretching and strengthening exercises, keeping a pain diary, diet restrictions, and meditation, was another source of stress. Combined, the medical interventions and self-management techniques had caused what I call “treatment burnout.”

As a patient, I have intensively researched what steps I can take at home to manage my symptoms. Over time, my to-do list ballooned to 25 items, ranging from meditation to medication. This proved to be unsustainable. I found myself feeling guilty and stressed at the number of things left undone at the end of each day. I would wonder if a flare-up was caused by the fact that I’d forgotten to take my omega-3 supplement or because I had broken my diet and eaten gluten. Ultimately, I realized the to-do list had become part of the problem instead of the solution.

What Is Treatment Burnout?

Burnout is considered an occupational condition, so it may seem strange to apply it to the experience of being a patient. In my opinion, being a patient is a full-time job, and therefore, burnout is as applicable to us as it is to workers and caregivers. The work of being a patient includes medical research and reporting (pain diaries, research notes, and question lists), attending meetings (appointments), health insurance or disability claims, scheduling appointments and pacing activities, personal training exercises, diet/nutrition preparation, etc.

Burnout was first defined as the extinction of motivation or incentive, particularly when your dedication to a cause, job, or relationship doesn’t achieve the results you worked so hard towards. It is characterized by:

• emotional exhaustion and feeling numb or distant from your patient work
• cynicism and pessimism dominate your thinking about patient work
• feelings of reduced capability to effect change in your condition
• escapist fantasies about moving away or desire “to get off this train”
• obsessing over patient work frustrations

In contrast, a motivated patient is ready and willing to try prescribed treatments or adopt lifestyle changes and self-management tools. You feel hopeful that these measures will be helpful, even if you know it will be a trial-and-error process to find what works for you. If you are struggling to generate the will to attend appointments, go to the pharmacy, or do your stretching, then you might have treatment burnout.

The Hidden Toll of Medical Interventions

A friend recently told me they had decided to forgo a medical intervention, even though it could provide them with temporary pain relief, because the stress of doing the procedure outweighed the possible benefits. This decision probably would not make sense to someone who doesn’t have a health condition. Why wouldn’t you take advantage of an intervention that offers pain relief? However, this pro/con analysis ignores the very real mental, emotional, and physical cons of interacting with the medical system. It is often exhausting, painful, and anxiety-provoking to undergo medical procedures.

This has been true in my own experience. Last year, I received a nerve-block to relieve my SI joint pain. However, having the needle inserted into the joint felt like 11 out of 10 on the pain scale. When I yelled out and cried, the specialist told me he “wasn’t even doing anything” and that I was being “too emotional.” Sadly, many patients have experienced a variation of this story. In fact, some patients have found their medical interventions so intense that they have developed medical PTSD (post-traumatic stress disorder). However, in the medical literature, you will find many studies about burnout among healthcare professionals and caregivers, but it’s almost impossible to find research into patient burnout.

What is the difference between depression and burnout?

Depression and burnout are different conditions, although burnout may increase the likelihood of experiencing depression down the road. While certain symptoms such as irritability, negativity, and lethargy are common to both, depression may also include pervasive sadness, low self-esteem, and hopelessness.

Burnout is related directly to work and often improves during vacation or extended respite from work. In contrast, depression permeates all aspects of daily life and isn’t alleviated by time away from work. In the context of being a patient, burnout may apply when the source of your feelings is your experience with the medical system or an overwhelming number of self-management strategies. However, if your feelings extend beyond your patient responsibilities to all parts of your life, then it might be time to talk to a mental health care provider or doctor to talk about depression.

How can I address treatment burnout?

Patients Need Respite Too: Caregivers are often advised to take respite breaks to maintain their mental health. But who thinks of recommending this for patients?! Mental health is part of your overall health and deserves to be considered alongside other health issues. For example, one chronic warrior recently told me her GP had arranged a “treatment vacation” during the summer months for non-essential treatments.  It’s also okay to say no to new treatments if you are experiencing patient burnout.

Review Your Treatments: As a patient, it’s not possible to quit your stressful job. But it is possible to review your current medical treatments with your doctor or discuss scheduling a respite. I recently spoke with my GP about my overwhelming number of appointments, and we came up with a plan to strategically manage these by making some appointments virtual, spacing others, and putting a few on hold, so that I only have one appointment per week. For example, I have halted medical procedures like nerve blocks, spaced physiotherapy appointments to once a month, stopped further referrals to specialists, and arranged to have check-ups by phone.

Self-Compassion – treating yourself like you would treat a best friend

Self-Compassion vs. Self-care: Acts of self-care can sometimes feel like additional to-dos that only increase the burden of your daily treatment regimens. Candle-lit bubble baths aren’t helpful when they feel like a chore that drains your precious reserves of energy. In this case, self-compassion, which means treating yourself like you would treat a best friend, is more effective. Give yourself a break. Treat yourself gently. Do what intuitively feels right to you. Researching a new supplement or medical device when you have treatment burnout may only cause more stress, especially if they don’t work. Sometimes the most effective thing you can do for your health is to stop and just be for a while, instead of always doing another treatment.

Katarina Zulak is a health blogger,­ health writer and all-around health nerd. Nine years ago, Katarina was diagnosed with fibromyalgia and endometriosis. On her health journey, she has learned the power of self-compassion and self-care skills to improve her health and wellbeing. As a writer, she is excited to educate and encourage others to be skillfully well, even if they have a chronic condition.

Katarina lives with her husband and their cat Sarah. She loves learning, being outside, reading, gardening, and catching up with friends over a steaming mug of tea.

Find out more about Katarina at:

Blog: http://skillfullywell.com
Twitter: @akatarinaz
Facebook Page: @akatarinaz
Pinterest: https://www.pinterest.ca/akatarinaz/