A Not-to-Do List for Life with Fibromyalgia

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I recently began reading Toni Bernhard’s wonderful book How to Live Well with Chronic Illness.  I was inspired to write this post after reading a section in her book where she outlines her ‘not-to-do list’. Bernhard rightly points out that it takes a great deal of self-discipline to stick within the restrictions imposed on your body by chronic illness.  In my own case I’ve found that most of my self-growth has come from recognizing, accepting and learning to do things differently in response to these restrictions.  I thought I would share my own not-to-to list:

  1. Do not equate productivity with self-worth: in my life before fibromyalgia I made work my top priority. I was in my mid-twenties and trying to start a career. I made a lot of sacrifices in my relationships and personal life in order to achieve these goals.  When all this came crashing down and I was no longer able to work, I could not see how I added value to the world around me.  Although I lead a much more well-balanced life now, I still have that voice in the back of my head every day judging whether I accomplished enough, and in turn, how good I feel about myself.  Now I challenge these thoughts.  When you live with chronic illness, every act of self-care, pursuit of a hobby, time spent with a loved one, or even regular work are all “productive”.
  1. Do not spend more time with toxic people then you choose to: we all have people in our lives, whether friends, colleagues or family members who are difficult to be around. They make us feel upset, drained, and negative. Sometimes I refer to these people as ‘energy vampires’- after visiting them, you feel depleted and depressed.  These are people that you need to set boundaries with, regardless of any guilt they may throw your way.  Toni Bernhard writes about having a revelation that she was not personally responsible for the behaviour of other people.  She practices equanimity about the fact that other people often don’t act the way we want them to, which I think is a valuable insight for people living with chronic illness.
  1. Do not push through: at the beginning of my illness journey, I never let myself “give in” to the fatigue or pain I was experiencing. I would stay out at a cafe all afternoon, even if I started to go cross-eyed with exhaustion, rather than surrender to my limitations.  Now I understand that this not-to-do actually helps me transcend my limitations, rather than surrender to them. After taking a Mindfulness Based Stress Reduction class, I learned to develop a different relationship with my body.  I try to work with my body, rather than in spite of it. For example, I really wanted to write this blog post today, but I am especially fatigued after a bad night’s sleep.  So instead, I am writing one bullet point, then resting, then writing etc.  You have probably had ‘pacing’ recommended to you before.  Personally, I don’t usually follow a rigid pacing schedule, like 15 minutes work, 15 minutes rest, etc.  Instead, I regularly check in with my body and accommodate accordingly.  To me, for pacing to be successful, it needs to be about more than scheduling; it’s about building a better relationship with your body.
  1. Do not add judgment of yourself on top of the challenges you already face: most of us are our own worst critics. We often set impossible standards for ourselves.  Even in the face of the challenges of chronic illness, I still think that I should be more positive, zen, strong, or competent, among other things.  When I get upset about something, I’m good at piling more judgment on top of myself for even being upset in the first place.  By being more aware of my inner dialogue, I’m getting better at recognizing when I do to this.  When I catch myself, I try to say ‘this extra judgment isn’t helping me deal with the real problem here’.  I take a deep breath and begin again.
  1. Do not say “I should” or “I have to” or “I must” to yourself: These types of statements set impossible standards for yourself, and are unrealistic given the constant flux of symptoms that characterize chronic illness. I’ve learned it’s important to hold intentions about what I would like to cultivate more of in my life.  Intentions are always present.  We always hold them in this moment. Goals about what you should/must/have to always do exist in the future. When you live with chronic illness you have so little control over what tomorrow will look like. ‘I should’ statements presume an all or nothing definition of success. These types of statements set yourself up for failure. It’s more helpful to say “I’m going to try my best to do __”. Hold this as an intention, even through set-backs.
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14 thoughts on “A Not-to-Do List for Life with Fibromyalgia

  1. Rebecca says:

    Excellent post! I especially appreciate the reminder to not criticize myself for lack of productivity, and the reminder to not be judgmental toward myself. I’ve been suffering from fibromyalgia for a number of years, but have a recent diagnosis. It’s been a challenge (but a relief) to realize and accept that it’s not “all in my head,” as too many doctors have told me. I also have a seizure disorder with seizures that so far haven’t been treatable with meds, and I’ve struggled for years with the need to not “push through” and keep on doing things when I need to rest. That’s coming more easily for me since my diagnosis: apparently I think fibro is more of a serious, real illness than having seizures, which is obviously ridiculous. Anyway, thanks again for the post, and have a happy October!

    • Katarina Zulak says:

      Glad you enjoyed reading this post 🙂 I wrote it as a reminder to myself to keep working on unhelpful negative self talk. From reading other posts in the amazing online chronic illness community, I think these tendencies are all too common! It’s funny that we have different emotional reactions to different Diagnoses. I find myself more upset by endometriosis pain than fibro muscle pain. It’s all in how we interpret it, I guess! Thanks again! Be well 🙂

  2. Valerie Brock says:

    I struggle so much with trying to push through my exhaustion and pain. I am def. guilty of being my own worst critic. This has so many good reminders for me. Pinning to refer back to later. Love, love, love this post.

    • Katarina Zulak says:

      Thanks for reading! I also wrote it as a reminder to myself to challenge the unhelpful things my mind does. Living with chronic illness is hard- so even when I break my not to do list, I’m trying to remember to be kind to myself. We should be proud to get through each and every day!

  3. Nikki says:

    Reblogged this on Brainless Blogger and commented:
    This is a great post but the one I need to be reminded about a great deal is: Do not equate productivity with self-worth. Productivity can suffer a lot with pain levels. And my self-worth when I cannot function well can plummet like a rock. Even though I understand that I have these limitations I need to exist within. That comparing myself to others who are healthy or to my past self who was, well, healthier at least… is not such a great idea. Or having these standards I cannot attain. These expectations on myself that are impossible. Setting myself up for failure…And Then thinking that that means I am worth less as a person because I couldn’t push through the pain to achieve an impossible goal. and you know, that is a horrible, horrible feeling to dump on yourself.

    • Katarina Zulak says:

      Thanks so much for your comment! I’m right there with you on the negative self-judgement about even a few days lack of productivity. It’s hard to kick the internalized ableism. But something I’m working on daily!

  4. creatette says:

    Thank you for sharing this post. I can’t tell you how much I struggle with constant negative self-talk and guilt. Guilt over everything! And I don’t know why. I live alone so it’s not like I’m letting someone down or asking for help. I think it’s me against…me. I judge myself pretty harshly and I’m not sure why. I think I’ve always been this way but it’s definitely gotten worse since Fibromyalgia’s settled in.
    Your post, the list, & your words are both very comforting & reassuring. Thank you ♡♡♡

    • Katarina Zulak says:

      Thanks so much for your kind words and it really made my day to know that the article was helpful for someone else. I think internalized ableism is really tough to counteract and we’re really good to being our own best critics! I definitely found that mindfulness meditation has helped me to reduce negative self-talk and be kinder to myself but it’s a daily challenge. Sending hugs!

  5. B says:

    Spot on. Thanks so much for sharing this. I used to be an overachiever. Now, I am lucky, if I can get up, muddle through the day. Thank you for reminding us that we are not alone.

  6. Valerie says:

    Thank you so much for this! I’m going to share it with every person that I know with chronic illnesses. Truly uplifting and great advice, just what we need.

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