ME/CFS and Personality: A Glimpse Inside My Head

14 Sep
The perfect sunset? photo by Jess B.

The perfect sunset? photo by Jess B.

I’ve been pondering certain personality traits of mine for a while now, thinking about how they contribute to my illness ME/CFS.

The characteristics that I’m referring to are:

  • Perfectionism
  • All or Nothing
  • Obsessive
  • Worrier
  • Now Now Now
  • Pusher
  • Hard Worker
  • Low Self Confidence
  • What Other’s Think Of Me
  • High Standards
  • Type A
  • Catastrophe Thinking
  • Negative Thinking
  • Planner
  • Controlling
  • Should Thinking
  • Will  Power (lack of)
  • Self Discipline (lack of)

 I can see that these traits were at work in me during the years when (I thought) I was healthy; in the years where I was slowly declining, slowly losing my grip on life as well as the years since my collapse with ME/CFS. Yes, these characteristics have always been with me. The strength and severity of the various traits have varied over time, but nonetheless they were and are always with me. This is only natural given these are my personality traits. They do not comprise my whole personality mind you, I would also describe myself as kind and caring, sensitive, happy, chatty, social, loving, loyal, organized, thoughtful and more besides.

So does personality play a role in ME/CFS?

I think it does. ME/CFS is a neurological condition after all, our brains are involved in this horrible illness and thus to me it seems only logical that our personalities are involved too.  I am NOT saying that this means that ME/CFS is ‘all in my head’. I DO NOT think that IN ANY WAY and I scream and shout at anyone who dares to suggest otherwise. But I do think that certain personality traits of mine contributed to my fall from grace with ME/CFS. I say CONTRIBUTED TO specifically for a reason. I am not saying that these personality traits were the sole cause of me getting sick. The causes of neurological fatigue disorders such as ME/CFS are multi-faceted, complex and to some extent still unknown. All I am trying to say is that being the person that I was / am, being the hard working, perfectionist who always worried about what others thought of her, although good in some respects (it made me a damn fine lawyer for example – even if I do say so myself) it made me push myself far too hard for far too long, ultimately burning my poor body out. Worrying about every little thing, never being satisfied with my achievements, never doing anything half hearted, created a heck of a lot of internal stress. It put a heck of a lot of stress on myself. Being stressed out over an extended period of time makes us vulnerable. It makes us exhausted, it drains us. It depletes our immune systems, making us the prime target of any and every virus doing the rounds. Our bodies become conditioned to the stress. We get stuck in stress response mode. Our bodies constantly think we are being attacked by a tiger. Our non vital bodily functions operate sub-optimally allowing our energy to focus on either fighting or taking flight from the stress situation.  This is one part of the complex picture that sometimes leads to ME/CFS. Sometimes. Not always. I.e. not everyone under chronic stress will develop ME/CFS. It seems to depend on what our body’s inherent weaknesses are. Some people may have a heart attack. Sometimes I think thank goodness I ‘only’ have ME/CFS (and POTS and IBS…)

Or is this the perfect sunset photo? By Jess B

Or is this the perfect sunset photo? By Jess B

Not everyone with the personality traits above will develop ME/CFS. That is important to remember.  And although I acknowledge that my personality traits may have had a role to play in me winding up with ME/CFS, I do not think my getting ME/CFS was my fault. Yes I could have been more laid back, less perfectionist, pushed myself less hard. But that was/is my personality. I don’t think we choose our personality. Of course sometimes we choose to act in a certain way, to be bossy or moody for no reason for example. But I genuinely think that our personalities are out of our control to a large extent. They form and operate at an unconscious level. It is only when we stop and think; stop and shine the large self awareness torch on ourselves that we have even half a chance of reconfiguring our personalities. So yes I think certain of my personality traits may have contributed to my ME/CFS but these were out of my control at the time. In the last few months running up to my collapse with an awful virus that triggered this current ‘episode’ (nearly 3 years and counting) of ME/CFS, I barely had the time or energy to notice my hand was bleeding never mind that I was pushing myself far, far too hard by being overly conscientious and perfectionist at work and at home.

But did these personality traits contribute to my ME/CFS or are they a product, a symptom, of my ME/CFS?

Which came first the chicken or the egg? This is a toughie. I can now see that I had been suffering with ME/CFS symptoms for many years prior to my collapse and diagnosis. I can also see that during those years all these personality traits were hard at work, and increasingly so as time ticked by. Were these personality traits early signs of ME/CFS? To be honest I don’t know; and I think I’ll stay on the fence and say that it works both ways.  I remember one night last year when Lou was staying over and she was helping me hang up the washing. I was meant to be sat down and just letting Lou get on with it. But the tightness and tension I could feel was like a clenched fist gripping my chest. It was so physical I couldn’t ignore it. The cause of this stress? Lou wasn’t hanging up the washing in the way I thought it should be done. Yes saying it loud and writing it down makes it sound very silly. But it was seriously stressing out the controlling, perfectionist, make believe high standards me. The stress was real; physical; in my chest. I think I can safely say that isn’t ‘normal’. That is perfectionism taken to the absolute extreme. To me that’s isn’t natural personality. To me that is ME/CFS at work. It was ME/CFS that caused me to feel like that i.e. the perfectionist anxiety is a consequence not a cause of ME/CFS. But equally feeling that level of stress will only have worsened my ME/CFS symptoms by triggering the full on stress response mode to kick in when there was no tiger to flee from i.e. the perfectionist personality trait contributed to my ME/CFS. Firmly on the fence.

Some of these traits are more inherently unhelpful to our health than others. Some are only unhelpful when taken to very extreme echelons which is where ME/CFS seems to have taken me. I’ll talk about this some more in subsequent posts.

I have mellowed in so many ways over the last couple of years. The physical limitations of ME/CFS have forced me to. But these traits are still at work in me and I don’t always manage to reign myself back in from the perfectionist now now now cliff edge.

In future posts I’llexplore how some of these personality traits worked and are stilling working in me. Yep there’ll be plenty of crazy lady stories coming up. So stay tuned for that!

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26 Responses to “ME/CFS and Personality: A Glimpse Inside My Head”

  1. dawnhosking September 14, 2013 at 9:13 am #

    Stress can have devastating effect on the body. That’s an interesting post. 😉

    • myjourneythrume September 14, 2013 at 9:15 am #

      Thanks. It’s something I’ve been thinking about for a while, finally got it down on paper!

      • dawnhosking September 14, 2013 at 9:19 am #

        It’s really interesting isn’t it. I look forward to reading more 😉

  2. Ami Hallgarth September 14, 2013 at 9:26 am #

    Hi Jess – again another post I can totally identify with! I share many of these traits and in hindsight realise that I too was clearly pushing myself way outside was what a ‘healthy’ state to be in before I finally collapsed with M.E 2 years ago. I think after i had my son 5 years ago I went back to work full-time and continued to maintain exactly the same amount of time/dedication to work as I did before having a child. My perfectionist and ‘can-do’ patterns had been running for far too long not to!

    This now meant I was striving to be the best possible mum and the best possible worker, which isn’t an easy balance to achieve! This, coupled with the fact my son became very ill and ended up in intensive care for a while resulted in feelings of guilt, worry, sadness, stress, and anger at not being able to be at home with him (we couldnt afford for me not to work). I believe this was the real start of my problems…I dont think we realise how dangerous prolonged negative feelings of guilt, beating ourselves up about things without actively changing the situation can have on our bodies over time.
    I was commuting 4 hours a day and started having panic attacks on the train, as well as recurring viruses….
    I changed jobs in attempt to create a better work/life balance, and cut my commute time by half. This worked for a while but then things stepped up at work and I was working every hour of the day and was under serious stress at work for a period of 6 months and kept getting tonsillitis but never really took any time off to properly recover as I felt ‘there was no time.’ Meanwhile my family saw very little of me at home and when I was there I was so anxious about work I’d regularly be in tears or my mind would be on work-related matters and then I’d feel guilty about not being a good mum/partner and all the time trying to do as much at home – cooking, cleaning,etc to make up for it. My partner had been made redundant so there was a lot of worry about that and also put more pressure on me to keep working.

    Things came to a head when I had a bad car crash in May 2011 which forced me to stay off work for 2 weeks. I spent the whole time feeling guilty and frustrated at missing work, as all the projects Id been working on for the last year had come to fruition and I wasn’t there to manage them! The frustration was unbearable and I felt that no-one else could manage them in the way that I would…

    This physical trauma definitely seemed to change something in me, but I returned to work and soldiered through the incredible pain of whiplash on top of a very busy work schedule, flat out for 3 months. I took some time off during which I became ill again with tonsillitis and that was it – never seemed to recover. I started fainting at doctors – at work – lost all my strength, stamina and found it increasingly hard to work. I kept returning to work, I think, because my determination was so strong, but in hindsight that was really stupid of me and I should have just ‘surrendered’ and said that enough was enough. I eventually took 5 weeks off then returned part-time. i carried on crashing, taking the odd week/s off, returning for 2 years before I got so bad I was forced to stop altogether in June this year. Even though I knew I needed to stop work, old habits die hard and my sheer will power and inground belief that I had to keep going, and to stop would be seen as a failure, kept me going. Sometimes our ‘headmind’ as it’s sometimes called can actually be very damaging to our bodies, and if we listened more to our ‘bodymind’ we could learn a lot!

    I started practicing the ‘Gupta Programme’ last November, which I feel has helped quite a bit. Like many M.E sufferers I’ve tried various therapies, including massage, acupuncture, cranio-sacral therapy, homeopathy, overhauling my diet, many expensive supplements,etc,etc the list goes on! However, reading Ashok Gupta’s theories on M.E makes a lot of sense to me, as he addresses the common personality traits that feature in a lot of M.E sufferers. The recovery treatment includes regular meditations to calm the nervous system down, positive visualisation exercises that focus on what I will do when I AM better and various ‘pattern breaker’ exercises, which encourage you to identify unhelpful patterns that are running either consciously or unconsciously in our minds and consciously interrupting them.
    This way, the adrenaline cycle is broken (or reduced at least) which allows our body to enter into a better healing state and hopefully then start to recover from this horrible, confusing and frustrating illness!!!
    I can’t quite believe I’ve written such a long post…hadn’t intended to! I am now so exhausted i’m going to have to stop but thanks again for your informative post and food for thought.
    All the best
    Ami

    • BONNIE JOHNSON September 15, 2013 at 5:09 am #

      IT AMAZES ME HOW WOMEN TRY SO HARD TO BE SUPER HEROS–& WHAT DOES IT GET US?? WE WORK BECAUSE WE ”HAVE TO” & MAKE OURSELVES SO SICK WE CAN’T EVEN HAVE A NORMAL LIFE OF ANY KIND!! IRONIC! I CAN’T BELIEVE WHAT U WERE TRYING TO DO, AS A MOTHER!!!

    • myjourneythrume September 15, 2013 at 9:54 am #

      Hi Ami,
      So nice to hear from you again, and thank you for such a lovely long comment. Hope you didn’t suffer too much from the energy it took to write it. I feel for you so so much. Your story is so familiar to mine. When I look back I’m amazed I was able to keep going for so long. As I read your story I thought to myself, wow, how you kept going for so long is amazing. It took a lot for me to give up work too. After my first 3 months off I returned to work part time. I think that cost me my health to be honest. If I’d stayed off and rested and fully recovered at that stage perhaps I wouldn’t still be so ill 3 years on, but then again, who knows. Hindsight is a wonderful thing but what ifs are just plain dangerous. I think I needed to push myself by going back to work to prove that actually I was really too ill to work. I needed to see that for myself rather than doctors just telling me. I have heard of the Gupta programme. The science behind it is very similar to the Neuro Behavioural Training programme that I follow. I think the key is to resetting all these long held destructive unconscious patterns. I think/hope that will help unlock our energy by reducing the internal stress. It’s not easy and is made up of so many tiny pieces, that’s why to me personality seems relevant. Thank you again for reading and commenting, it was lovely to hear from you.
      Take care, Jess.

  3. starrystez September 14, 2013 at 10:46 am #

    Hi, I lived in a high stress environment from the time I was born and spent most of my childhood in a PTSD state. I developed M.E in my late teens after severe flu but recovered two years later, only to relapse again after a period of severe stress stemming from an abusive marriage. To my mind there are many factors, including biological suspectibility to illness (my mother, who doesn’t have M.E, does exhibit some of my own symptoms including a pounding heart after eating a large meal), stress, personality traits and the ability (or not) to manage one’s stress, plus environmental factors such as diet, pollution etc (I was brought up on a junk food diet and have bad intolerances to junk now). Your post is very interesting and informative and encourages us all to keep an open mind, It’s never about blame, only understanding the illness holistically.

    • BONNIE JOHNSON September 15, 2013 at 5:10 am #

      VERY WELL SAID!! I TOTALLY RELATE!

    • myjourneythrume September 15, 2013 at 9:58 am #

      Thank you for reading and commenting. I’m so glad to see that my intention with my post came across – I think the key to this illness is to understand it holistically. We have nothing to lose by keeping an open mind and so much potentially to lose by not being open to all kinds of recovery options. I totally agree there are many different factors that contribute to the illness. I like you feel stress was a key factor but not the only one. I get a pounding heart after eating a large meal too – I wish you weren’t suffering but it’s so nice to know it’s not just me!

  4. Jumping_Jenny_444 September 14, 2013 at 1:20 pm #

    I agree with you that personality can play a role in developing chronic illnesses such as ME/CFS and fibromyalgia. Before dealing with fibro, I DEFINITELY had issues with perfectionism, being a hard worker, being too hard on myself, and having to take on everything when I didn’t have to. Since having this chronic illness, it has taught me to slow down, ask for help, and forgive myself when I don’t do something perfect. Great post, and I love both of your sunset photos! 🙂

    • myjourneythrume September 15, 2013 at 10:01 am #

      Thanks, I love sunset photos. These two were from the balcony of our hotel room on holiday in Greece a few years ago. I’m glad you relate to my post, nice to know it’s not just me who feels like this! I have been made to slow down by my illness too. I am way more mellow than I used to be but some of these habits and traits are very entrenched and very hard to break. I still struggle with them on a daily basis and I think they are in part at least holding my recovery back. That’s why I think NLP approaches have a role to play in recovery.

  5. currankentucky September 14, 2013 at 3:00 pm #

    Brilliant post and reading through the comments above there really is an argument to consider personality traits. As you know when I first fell ill, my stubborn streak took over and I continued to push to work, why? Because there was some trigger in me saying I had to! I do often wonder had I nursed my body when i first got ill would I be in the state I’m in now? But to do that is also dodgey, there is no point doing the what ifs! For me my past is in the past, this ME is a bridge, a bridge to meditate, to relax, to rest (hahaha as if i have a choice!), and whenever I do get better and head into the future it will be the future, I dont want to go back to my past, of course I want my life back but I dont want to approach certain things like I did, I want to balance things better, not stress over silly things, not to be such a perfectionist, to calm down I guess! Anything I took on I did 100%, when I first took up running i was already thinking about running a marathon, there was no such thing as just running a few miles and being happy, I HAD to take on a huge challenge, also with work, I HAD to work hard, beyond the hours I was paid to work, I HAD to be as perfect as I could, silly really, isnt it, especially as im pretty sure the person who took over my role is doing it as well as me, if not better, without getting so hung up on it! But, on the flip side, we are who we are, would we have been happy in our past lives being different?? For me anyway, I dont think so! Looking forward to hearing more of your thoughts. 🙂

    • myjourneythrume September 15, 2013 at 10:05 am #

      I totally totally agree – ME is my bridge to a new life, a time to rest and relax, that’s such a nice way of seeing our situation and I totally agree. I don’t want to go back to my past either, there are so many things I would do differently. In a way we are lucky, ME has given us the opportunity, the time, to stop and look at our lives and the way we are, it has given us (okay perhaps forced us) into the chance to change. Your marathon comment made me smile, I’ve never been into running long distance (or short distance for that matter) but if I were I would be exactly the same – run before I can walk, all or nothing!

  6. joyhselak September 14, 2013 at 3:16 pm #

    I think a trigger for me was a long period of constant stress that just wore me out. And infection, a surgery and boom sick for years. I guess the next question for me, and maybe for all of us is going on past traits that may have worn us out and allowed room for illness, to what illness makes of us. I like myself better now.

    • myjourneythrume September 15, 2013 at 10:07 am #

      I totally agree Joy. We have to allow illness to change us, otherwise our old patterns may just repeat and down the line we’ll be back at square one. I definitely like myself more now than I did before I got sick. I don’t want to be sick forever so if by changing some of my personality traits I can avoid that, then I’m all too willing to let myself change. All I want is to be better!

  7. thehomeschoolingdoctor September 14, 2013 at 4:06 pm #

    Great post. Aside from the M.E., thought you took it form my journal! Especially that not hanging up the laundry right! I like who I am and don’t want to change it, but I certainly can control the monster in many areas to promote my health! Have a great weekend!

    • myjourneythrume September 15, 2013 at 10:09 am #

      Hehe, your comment made me laugh. I’m so glad it’s not just me about the laundry! When I look back I don’t like the person I was before I got sick/ in the years of my health declining before I totally collapsed. All I want is to be well and if controlling my inner monsters can help me to achieve that then bring it on!!Hope you and your family are having a fab weekend 🙂

  8. BONNIE JOHNSON September 15, 2013 at 5:15 am #

    VERY WELL THOUGHT OUT & WRITTEN!! I SEE ME ALL THROUGH YOUR INFORMATIVE PIECE.

    • myjourneythrume September 15, 2013 at 10:10 am #

      Thank you Bonnie. I’m glad you enjoyed my post.

  9. E. Milo September 17, 2013 at 5:12 pm #

    Exactly!!! All those traits are mine, too – except maybe the lack of will power because, for me, being a perfectionist means if I decide to do something, I do it in the strictest way possible.
    When I was first in charge of 3 restaurants, I did everything. As we grew to 7, I STILL did everything! I thought nobody knew the answers like I did or could train like I did. My bosses continually said, “give up control.” I never did until I got sick and realised the end was coming.
    But I’m still a freakish controlling perfectionist with ME! I must rest at this time, eat at this time, sleep at this time… And your laundry example! One of our first arguments once I was really debilitated was about how he folding blankets and didn’t put them away. He said, “it doesn’t matter” and I wailed, “IT MATTERS TO ME! I CAN’T DO IT MYSELF, SO PLEASE DO IT THE WAY THAT MAKES ME SANE!” Needless to say, a year later, no laundry is folded nicely or put away where it should be. This illness sucks! 🙂

    • myjourneythrume September 17, 2013 at 5:34 pm #

      I used to be exactly the same with my routine, really strict about what times I rest, eat, etc. I still am but less so. It used to stress me out so much if I was ‘behind schedule’ which obviously made everything worse! Somehow I’ve mellowed on that over time. I was saying to a friend that I didn’t think I had much will power and she said she thought I had buckets of it. Maybe my own assessment is in fact being perfectionist about it and I’m better at it than I think!

    • myjourneythrume September 17, 2013 at 5:35 pm #

      And yes ME/CFS definitely definitely sucks! You get no argument from me on that one!

  10. Linda Williams Stirling September 19, 2013 at 1:02 am #

    An excellent post, and the comments are great, too. Reading all this is like looking at the story of my life. I could duplicate your list exactly. One does have to wonder if Type A personalities are more prone to this. In my online Fibro/ME support group, the same question was raised as they also were predominantly Type A’s. I’ve always pushed myself so hard throughout my life. I was a single parent to 3 children, since they were all under 5 years of age, now in their 30’s. I put myself through school, law school, and later studied Fine Arts. I ended up as a Diplomat for the US, and lived and worked in several countries, before my body and mind just suddenly stopped working. Still, it’s hard to stop doing; to learn to just sit and rest. As a perfectionist, keeping my mouth shut and letting the people helping me do their own thing has been SO difficult. But, I want them to feel appreciated for their help, not chastised, so I clench my teeth and smile. Oohh, that’s more stress in it’s own way, isn’t it? Vicious circle we live in. Lol….a sense of humor helps!

    • myjourneythrume October 3, 2013 at 8:36 am #

      It is so hard to stop doing and sit and rest. You’re so right. I do lot of clenching teeth and trying to keep quiet too. It is definitely not a stress free approach but has gotten easier as time has gone on. This illness has definitely made me calmer and mellower in many respects. Your achievements speak volumes and I totally relate to the pushing through. I think Type As are more prone to this, it seems we have an inherent weakness towards burnout and exhaustion from doing too much, too hard for too long. A really interesting area. I hope you are not pushing too hard today and manage to sit and rest 🙂 at least a little.

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