Chronic Illness and Acceptance

posted in: chronic illness | 5
Resilience @ 2013 Jane Waterman
Resilience @ 2013 Jane Waterman

One of the most difficult things I have encountered recently is not the challenges caused by life situations, or the challenges associated with health problems. The challenges that rock my world are more fundamental ones: ones that don’t require a chronic illness to understand, but ones that may be part of the fabric of chronic illness. The biggest challenge perhaps is acceptance: acceptance not only of the limitations that chronic illness brings to one’s life, but more importantly, the acceptance of self and one’s own fundamental self-worth.

Acceptance is tied up with so many things like contentment and improved quality of life. I’m sure that lack of self-compassion is the most fundamental barrier to acceptance.

Take for instance, my recovery from a recent operation to remove my gallbladder. The surgeon’s office gave me preparation and recovery information ahead of time. The recovery information said I would start to feel better within a few days, and within two weeks I would be playing golf and tennis again. Let’s just say my brain also filtered out the fact that I wasn’t able to do these activities before the surgery. Around day 4 of recovery, I sneezed, and felt an awful knifing pain deep inside. For two days, I felt like the pain was worsening rather than getting better. By the end of the second day of this, I couldn’t take a deep breath without pain. When I saw the surgeon the next day, she became worried about complications as apparently I shouldn’t be feeling that much pain. I was sent to the ER for tests. The ER was busy, and it was a drawn out, exhausting 7.5 hour process. It turned out that for whatever reason, the inflammation was greater than “typical” and I was just going to take longer to heal.

Why was this a struggle to accept? I think my mind adopted the belief that I should be better in two weeks’ time, which allowed me to give myself hell that I wasn’t getting better. This morning I realized it’s been just over two weeks since the surgery, not two months. I still have bruises on my stomach, so even my body is visually reminding me that things aren’t healed.

Another battle for acceptance recently arose from my part-time job as a technical writer/editor. Writing and editing are the joys of my life – the gifts I believe have been largely spared from the carnage of my autoimmune disease. And yet, I can only work part-time. Some weeks, I’m lucky and I can work 15-20 hours. Other weeks, it’s closer to nothing. In recent months, my main client has brought in a lot of new employees to help with a huge project that requires intense deadlines. There’s no way I can do the work myself, especially factoring in the surgery and recovery from recent events. I struggle with the thought that maybe one day I won’t be able to work at all. Instead of accepting this, I just accept that I am a failure.

Around the two-week mark of my recovery, I proceeded to do a bunch of household chores that would perhaps make a healthy person tired. I ended up in bed in intense pain, exhausted, and then the lack of acceptance reared its ugly head. From there, I progressed to the fundamental feeling of unworthiness that I’ve possessed since I was a child. I’m different. I’m not good enough. There’s something wrong with me. I can’t do what others do. I can’t do what I used to do. I’ve failed.

It occurred to me then that I was comparing myself to my self before I got ill, when I was 23 years old – half a lifetime ago. Recently, I had the opportunity to meet my new co-workers. I recall them in my mind’s eye. They are in their twenties. They likely don’t have immune diseases. They are starting out in their careers, where I was before Sjogren’s syndrome and depression intervened.

Mrs Blackbird reminded me that I am cruel in the standards I expect of myself. She reminded me that a healthy person would be tired by what I had done. Instead of hearing that, I was lost in that small self that worried about whether she had a place in the world, even if that place meant lying in a bed unable to do anything when my peers were running around living life.

Then I realized that the traits I possess are shared by so many of my chronically ill friends. We place the highest standards on ourselves, and have done so since our childhoods. We’ve had traumas and losses, and we’ve expected (and have been expected) to bounce back and keep giving of ourselves to families, friends, employers and the community. We do so naturally because it’s who we are. But there comes a time when we have to do self-care. That’s where we hit the proverbial wall. People who are accomplished in so many ways literally can’t figure out such a simple concept.

I believe self-care is anchored in acceptance of ‘what is’, and acceptance is anchored in self-compassion. We wouldn’t ask another to do some of the things we ask of ourselves when life and our illnesses have literally laid us out. Turning that natural compassion towards ourselves is difficult – something my chronically ill friends agree upon. Instead we measure ourselves against impossible standards – standards perhaps we couldn’t even achieve before we got ill, but through the rose-coloured glasses of our memories we fantasize that we did. In travelling to the past, or measuring ourselves against others and the things they achieve, we inflict the greatest suffering on someone who is as deserving of our love as anyone else – ourselves.

I used to think my healing would come from acceptance of my illness and an understanding of the limitations I live with. I’m convinced now that’s often a gateway to a frustration and a longing that’s so painful, we often feel it palpably in our bodies.

I’m starting to see that acceptance means something different for people with chronic illness. It means valuing ourselves, seeing ourselves as people worthy of love and compassion, and most especially, our own love and compassion. It means stopping the self-talk and litany of our perceived failures. It means seeing ourselves as precious as those who are most beloved and dear in our hearts.

What do you do to show compassion to yourself? Do you make self-compassion a daily practice? What changes do you think you could make that would add self-compassion to your life?  I’d love to hear your practices and ideas.

Blessings,
Jane

P.S. I highly recommend the following two books, which expand on the importance of self-compassion and acceptance. How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and Radical Acceptance: Embracing Your Life With the Heart of a Buddha. You do not have to be Buddhist to benefit from these books – I promise.

5 Responses

  1. Annette
    | Reply

    I saw an example of what you said last week when my friend received public praise. She was urged to pass the information on to others but was uncomfortable doing that. Her friends said “What would you do it it were someone else?” and she had to agree she would waste no time if it were anyone else. We get so used to beating ourselves up for what we can’t do.

    You probably did more housework that day than I have done in 6 months and still it wasn’t enough plus you are still recovering from surgery. You’d better be nicer to yourself or I will send you a big stack of Maxine cartoons so you can pick up some attitude.

    • Jane Waterman
      | Reply

      Thanks, Annette. It’s probably no coincidence that you just wrote a post about A-type personalities and chronic illness! We do have a hard time accepting what we can’t do, instead of focussing on what we can do as you suggested.

      I’ve read a few books about self-compassion. Some days I have a lot of trouble moving from the theoretical understanding to the practical application! I think the most effective approach is the one your friend’s friends suggested, “How would you treat someone else going through this?” I think if we make a practice of asking that question, we might stop beating ourselves up as much.

      Today I’m feeling pretty beat-up already, as though recent months have caught up with me. I’m going to try to put this into practice and rest as much as I can today.

      I love Maxine cartoons. If I had a tenth of that attitude, I could be a force to be reckoned with! :)

      Take care of you today!
      Jane

  2. Barbara Storey
    | Reply

    Oh, boy – were you looking over my shoulder today, dearest Jane? My Morning Pages over the last couple of days have been nothing BUT “How could you not be perfect and do everything you SHOULD do and used to do before you were sick?” when I’m in the middle of the most intense and tiring healing experiences of my entire life, which is definitely not without pain. Not to mention my energy is ALL being diverted to cooperating with this healing process, and I have none to spare. But yet I constantly berate myself for not following my normal routine and getting more done.

    We both need to be gentler with ourselves, don’t we? Thank you for the reminder, sweetheart.

    Love,
    Barbara

    • Jane Waterman
      | Reply

      It’s quite possible, my dear heart sister! :) *hugs* There is almost something compulsive about this relentless drive to DO things. Annette, who is another friend and commenter on this blog, recently wrote an entry about how a nurse told her that many people with rheumatoid arthritis are very much A-type personalities, and really don’t know how to slow down. I think that applies to many people with autoimmune disorders. I think the disease process tries to slow us down, but our minds won’t cooperate!

      I too have noticed that my self-talk is most strong and abusive when I am most challenged, and most likely to be laid out, as you must surely be now! *hugs* I don’t know how to stop it, but I think it starts with saying “stop”, and then asking if we would treat a most beloved friend that way. I am certainly going to be practising that!

      Thank you for commenting, and know that I’ve been thinking of you a lot as you go through this journey. Exciting and challenging I’m sure! You will need a good rest and holiday when you get back!

      Lots of love,
      Jane

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