Tag: invisible illness

Book Synopsis: How to Be Sick by Toni Bernhard


how-to-be-sickHow To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers

I recently read How to Be Sick for the third time! Each time I read this book I take away comfort and knowledge…comfort from knowing I am not alone and knowledge from the helpful practices she shares in the book. The author offers both a chronology of her illness and an introduction and explanation of primarily Buddhist-inspired principles and tools that help her deal with being sick.

(Important side note: people of any religion can benefit of this book…the concepts in the book are not ‘religious’ in any way and I believe they should not conflict with one’s own spiritual beliefs).

As I read her book, a feeling of relief comes over me, from knowing I am not the only person practically home-bound due to their health. Of course I know this to be true without reading the book, social media is full of us ‘spoonies’ sharing snippets of our lives, but there is something about reading her account of her illness and its impact on her life which I really connect with. For instance, I can so relate to her going to great lengths to stay at her job. She resorted to teaching her class sitting in a chair instead of standing, not to mention peeing in her office (you have to read the book to get those details)! Her account reminded me of when I was still trying to work and I would lay on the floor of my office during every break and lunch hour and then, like Toni, I would go home and crash for the entire night. We both pushed until we could do it no more. She then shares examples of missing out on family and social activities, being unable to take care of herself and a myriad of others issues we all face when living with pain/illness. She shares her story in an incredibly honest, open and humble way. She admits to breakdowns and at times not handling things well, however, she always moves forward from these challenges. She details the specific tools she uses to handle each type of situation.

The tools she refers to include Buddhist principles and practices such as the four sublime states, Tonglen and mindfulness. In non-Buddhist terms, these principles relate to compassion for oneself and others, acceptance, peace, and awareness. She keeps her explanations simple and easy to understand so readers unfamiliar with Buddhism should have no problem grasping them; while those familiar with Buddhist practices, will welcome learning how to apply the principles to living with illness/pain.

She references the work of Buddhist teacher Thich Nhat Hanh whose books, meditations and talks first introduced me to mindfulness and led me to the realization that I had finally found an approach that truly could help me live with chronic pain. Therefore, it was validating to have Toni include some of his practices in her book.

She also highly recommends and explains teachings of self-help author and speaker, Byron Katie, in particular, an inquiry tool called “The Work” where one is asked to go through a series of steps to challenge the thoughts towards one’s situation and then turn the thoughts around. I think we all have quite a few thoughts related to our pain/illness that could be effectively challenged with this method.

If it sounds like the book offers a lot of helpful tools and information, you are right! The author summarizes all the tools at the end of the book which makes the book easy to refer to and trust me you will want to refer to it over and over again.

Overall the book is wonderfully written and packed with so many transformative ways to approach dealing with illness and/or pain. Most importantly Toni serves as an inspirational example of someone who, living with illness, is changing lives and making a difference in the world. As Toni says, “there is sickness, but I am not sick.”

 

 

Invisible Fight Photo Gallery

#myinvisiblefight
“I struggle with more than just ‪#‎narcolepsy‬ — but this is a very visible reminder of ‪#‎myinvisiblefight‬” – Gina

 

I have received some really powerful photos from people showing their #invisiblefight with illness and/or pain. Check out the gallery of images so far! You still have time to submit a photo in order to be entered in a draw for a pair of Spoonie Earrings in honor of Invisible Illness Awareness Week.

*Read submission details here.

What is your Invisible Fight? Share a photo and win a pair of Spoonie Earrings!

The #myinvisiblefight Photo Campaign has been launched by Invisible Illness Awareness Week and since Chronic Pain Life is all about promoting the therapeutic value of photography, for individuals living with pain/illness, we have been asked to help promote the campaign! So we are going to showcase a photo gallery on our website of your #myinvisiblefight photos. Submit your photo to be included in our online photo gallery and you will have a chance to win a pair of Spoonie Earrings!

#myinvisiblefight3 WAYS TO ENTER THE DRAW:
1.  Join the Chronic Pain Life Facebook group and post a photo of your “Invisible Fight”. Be sure to tag it #myinvisiblefight.
OR
2.  Post a photo of your “Invisible Fight” on Instagram, tag me @chronicpainlife and hashtag #myinvisiblefight.
OR
3.  Email me a photo at info@chronicpainlife.com.


*Winner will be randomly selected on the last day of Invisible Illness Awareness Week – October 4, 2015.

*Your name will be kept confidential.
*By entering the contest you permit Chronic Pain Life to display your photo on our gallery page and use it for future purposes. Your name will be kept confidential unless otherwise requested. 

30 Things About my Invisible Illness You May Not Know

frida kahlo

invisible illnessTo help promote Invisible Illness Week I am sharing the MeMe:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Internal Disc Disruption/Derangement (IDD)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: Not being able to participate in even the most normal day-to-day activities as I am unable to sit, stand, walk etc. the majority of the time.
5. Most people assume: I look great so I must not be as disabled as I am.
6. The hardest part about mornings are: Waking up and realizing a have another day to persevere through.
7. My favorite medical TV show is: I don’t have one.
8. A gadget I couldn’t live without is: my camera.
9. The hardest part about nights are: waking up from dreams in which my body is working normally.
10. Each day I take __ pills & vitamins. (No comments, please) A couple of non-narcotic meds and many vitamins.
11. Regarding alternative treatments I: have spent thousands of dollars trying everything with no results…acupuncture, acupressure, cranio-sacral, Reiki, healing touch, plasma injections (that athletes use), prolotherapy, body-mind therapies, visualization, etc.
12. If I had to choose between an invisible illness or visible I would choose: hard to choose…I am grateful that I look “normal” but daily I wish I had a way of showing people what I am truly dealing with each and every second of the day despite my “normal appearance”.
13. Regarding working and career: So sad to know that I will never have either again so I have to find purpose some other way which is hard to do when I spend 90% of my day laying horizontally.
14. People would be surprised to know: that to get anywhere I usually have to lay horizontally in the back seat of my car and have someone drive me.  
15. The hardest thing to accept about my new reality has been: I may be this disabled forever and I am only 39.
16. Something I never thought I could do with my illness that I did was: keep on persevering through it all.
17. The commercials about my illness: there aren’t any.
18. Something I really miss doing since I was diagnosed is: sitting…to drive, to eat my meals, to watch a play, to fly, to watch a movie, to watch my nephew’s play sports, etc.
19. It was really hard to have to give up: the reality that I will never travel by plane ever again.
20. A new hobby I have taken up since my diagnosis is: blogging.
21. If I could have one day of feeling normal again I would: hop on a plane to Kenya…a lifelong dream.
22. My illness has taught me: life is not fair, good health should be cherished every single moment, nothing should be taken for granted.
23. Want to know a secret? One thing people say that gets under my skin is: “have you tried…”
24. But I love it when people: say “Wow, you are so strong to handle how you have to live your life. I bet not many people realize how hard it must be.”
25. My favorite motto, scripture, quote that gets me through tough times is: “At the end of the day, we can endure much more than we think we can.” – Frida Kahlo
26. When someone is diagnosed I’d like to tell them: stay strong, no matter how alone you feel, you are not. 
27. Something that has surprised me about living with an illness is: how there can be so few medical solutions or answers to my situation and so many other people’s. 
28. The nicest thing someone did for me when I wasn’t feeling well was: My Mom has repeatedly dropped everything to take care of me and comfort me.
29. I’m involved with Invisible Illness Week because: I really want people to learn not to make any assumptions about someone’s health based on their external appearance.
30. The fact that you read this list makes me feel: happy.

Peace and love,
Stephanie