The Seven Year Lesson

I consider myself intelligent, but sometimes I am slow to learn life’s lessons; lessons which seem so obvious in the luxurious position of hindsight. I’m not sure why I can be so slow. Is it because sometimes these lessons are difficult? Is it simply because I am human? Or is it actually because I am not that intelligent after all.

Anyway, after seven years, I think I have finally grasped why it is important to hang out with the right people (in real life and in the virtual world). When I look back at the mistakes I have made in this area, I feel torn between cringing and laughing at myself.

Mistake number one in all its technicolor glory: joining the local ME/CFS support group.

When I was first diagnosed with CFS I got quite heavily involved with my local support group. Me being me, I didn’t just pop along to a few meetings. Oh no, I became a committee member, organised events, chaired meetings, secured grants, set up remedial yoga classes, wrote the newsletter, and so on, and so on.

I am not sure why I got so involved. Partly, I think I did find it supportive talking to people in a similar situation to me. Also I wanted to help people: some people were very poorly and isolated, and this group meant a lot to them. And I liked doing something productive; I was missing my career enormously at this stage and it felt good to utilise some of my working skills.

As with any group, there was a cross-section of people: some were determined to get better and had a positive spirit, but some seemed negative and appeared to have given up on recovery. But that didn’t matter to me I decided – I was positive enough to handle their negativity without it affecting me.

I became good friends with a few people from the group. One lady had been ill for 10 years, was single and lived on her own – I couldn’t help but feel sorry for her. We used to meet for coffee or chat on the phone, but I would always come away feeling drained; she was definitely a glass is half empty person. But I wanted to support her so I carried on the friendship. And I repeated the same pattern with a couple of other people; I liked the feeling of helping people. But in reality by trying to help others I was negatively affecting my recovery.

But still I carried on. And then I did the craziest thing ever. The Chair Person of the group left and they asked me if I would take over. I did have reservations about doing this. At this time my health was on the up, I believed in holistic recovery and I wasn’t sure that this environment was right for me. But they didn’t have another contender and I wanted to help people who were worse off than me – so I said yes!

Again, I thought I could handle any negative people or ignore any limiting opinions people had about CFS; I thought my positivity created a protective shield that would block the negativity.

I lasted in the role as Chair Person for ooh, two whole weeks! I went to my first meeting and I realised I had made a huge mistake. You know when you have one of those moments that blinds you with the brightness of its light bulb? Well, I had one of those. It was a small comment but it rocked me to my recovery core: we were chatting about exercise and someone warned me to be careful. I am sure their comment was well-intentioned but all I could think is I don’t want to hang round people who have learnt to live with their illness, have entrenched its limitations in their identity, and don’t believe it is possible to improve. I felt terrible but I just knew I had to resign.

I also made an effort to stop hanging out with the people who drained me. Whilst I liked the feeling of helping people, I had to face up to the fact that all the negative energy was having a harmful effect on my well-being.

But apparently going through this was not enough to stop me making the same catastrophic level of mistake again.

Mistake number two: immersing myself in the ME/CFS online world.

When I started blogging I wanted to advertise my blog and attract readers, so I set up a new Facebook account and joined loads of ME/CFS groups. I thought this was the best way of starting out; I thought people who were going through something similar would be interested in what I was writing about. I knew I would come across people who didn’t share my belief in recovery, but again I thought me and my superhuman powers could handle it.

As a result of blogging, I ended up spending a lot of time hanging out in this community. And I met some wonderful and inspiring people. But I also became increasingly exposed to people who didn’t have the same beliefs that I had. And whilst I respect that people are entitled to their own opinions, and that these groups provided a huge amount of support to people, I became aware that spending time in these groups was having an impact on my own beliefs.

My belief in recovery was sometimes fragile, especially when the going was tough. It is a belief that needs nurturing not undermining and I have worked really hard to maintain this belief over the last seven years.

And here is the lesson: however positive you are, exposure to negativity seeps through to your own thinking; I had to acknowledge that people’s lack of belief in recovery was getting to me.

If I was having an energy wobble and went to a CFS chat room for some support, I would get lots of kindness. But I would also get drawn into a world dominated by thinking about CFS, about how hard it is to live with CFS, about how hard it is to recover and so on. That thinking does not nurture a belief in recovery.

If I was having an energy wobble, and instead of seeking support there, I went to a website such as Lissa Rankin’s, who believes in holistic recovery, after half an hour my belief in recovery would be strong again, and I would know my wobble was just a wobble.

The more I learnt about recovery on the Chrysalis Effect Recovery Programme, the more I realised I had to make some big changes to who I was hanging out with – again! I set up The reinvention Tour, I stopped hanging out in Facebook ME/CFS chat rooms and so on.

The truth is, if you hear enough people say you can’t recover, that thought now exists in your frame of reference, however strong you think you are.

So after seven years, and two rather large clangers, I think I have finally got it; whilst these groups may be right for some people, they were not right for me. And as I reflect on what I have learnt as I come to the end of the Chrysalis Effect Recovery Programme, I know the changes I have made in this area were key to improving my health. It also helped me become less attached to CFS as my identity, which has been another big part of moving forward for me.

And of course, although my lesson is directly related to recovery, the principle applies to all areas of our lives. When we hang out with the right crowd we feel invincible – and that is a feeling I like.

What lessons have taken you a while to get? (Can anyone top seven years?!)

25 thoughts on “The Seven Year Lesson

  1. Don’t know if I can top 7 years but I think I’m thereabouts. I have done exactly the same things as you – joined online support groups, which were full of very negative views and also felt the ‘need’ to help/support other people to the detriment of my own health. I’m still struggling to convince myself 100% of the time that I will/can get well but I’m much more conscious of who I spend time with, whether in person or in the ‘virtual world’. I think this is part of the reason why I’ve avoided support groups. It’s interesting how you don’t always realise how much you get drawn into the negativity until you pull yourself away from it. And yes I think you’re totally right to make M.E less a part of your identity. You can’t deny it’s there but you can avoid letting it become who you are. Great article once again :)xx

    • Hey lovely. Makes me feel slightly better to know I am not the only one to have been down this road (although it is noted that you only went down it once!)

      I really notice how amazing and positive I feel after hanging out with like minded people. There is so much power in someone else saying to you: ‘you can do this’.

      I don’t see myself as someone with CFS anymore. I see myself as someone with a wonderful life who just needs to keep taking really good care of herself; I am nearly ‘there’ and I know I will get there.

      And in the meantime, I intend to focus on everything I can do – and hang out with positive people like you…

      And you CAN get there too. Look at all the great work you are doing on yourself right now. You are so on the right track. Xxxx

  2. Hi Karen,
    Oh my word. How l can relate to this blog. I too go to local support group, rarely Actually!
    Talked me into going to the Xmas meal. Some are nice folks but l cant relate to them.
    Re the on line stuff, so true!!!!! I remember one aggressive arguement people stating 90 odd percent never recover. One of the main people is now massively improved.
    Keep blogging and keeping the right company, such as me of course! Imao! 😉 x

    • Hi Rog.

      Oh you have always been one of the ‘right’ people; you have always made me laugh and supported me on my recovery journey.

      My favourite was when you left that really ‘naughty’ comment on SATC (I think you know which one I mean!)

      Are you still doing well? I hope so….xxx

      • Hey thanks Karen,

        Naughty comment? me? surely not. Must have me mixed up with someone else? 😉 nah forgot, can’t remember yesterday! (just as well probably) 😀

        Doing well really, thanks so much! Shhh…(I don’t want to tempt fate).

        passed on things to others who have asked me, another thing that gets my goat, because then they often find elaborate reasons “not to do it”!. Its very tough when ill I know, but sometimes it pays to just try if you can. Difficult subject, handled well as ever! xxx

    • Hi David

      And this is exactly what I am talking about: you always offer me words of encouragement; a comment from you always sends me in the right direction!

      Thank you as ever for taking the time to comment, it means a lot.

      Hope everything is rocking in your world…x

  3. Hurray – finally someone whose outlook I can relate to. I was only diagnosed 6 months ago but like a dog with a bone decided I would immerse myself in the online communities. There is wonderful support but also too many who feel like its time to give up (and we all know how hard it can be). Me, I bloody well refuse to give up, if the body is such a force of nature and can keep you alive then it can certainly get you fixed as long as you put the time back into it. I’ve mistreated my body and now its time to give it the love and support it needs.
    Keep your blogs coming, they’re excellent 🙂

  4. Hi, I’ve just found your blog and been reading through a few of your posts. Love it! Very inspiring. I agree with your thoughts on positivity and how hanging out with the wrong people can damage your chance of recovery. I think it can be hard though to find the ‘right’ people, especially when you’re not well and can’t get out as much as you’d like. Any thoughts on how to do this please? Thanks again, best of luck with your writing – I think you’re very good at expressing the things we feel but can’t always put into words! Keep up the good work. Laura x

    • Hi Laura

      Thank you for the lovely comment.

      Well, I find personal development websites very inspiring, one of my favourites is Deva Coaching.

      I still hang out on Facebook and Twitter but I only connect with people who make me smile! Again, on Twitter I follow lots of personal development people.

      For more specific support on CFS recovery, I would recommend the Chrysalis Effect Recovery Programme Facebook page and the Freedom from M.E. website.

      For inspiration on holistic recovery, I like Louise Hay and Lissa Rankin.

      But we are all different, I think go with what inspires you and what makes you laugh.

      Good luck! Hope to see you soon…xx

  5. A very quick P.S. sorry Karen,

    Just to say, I’m glad I didn’t find on-line forums at first because it may have led to totally mental breakdown for me! not “support”. To be very serious, It could lead to someone harming themselves in the worst case scenario! That really worries me, these “amatuer” experts should be careful what they write. i do feel strongly about that.

    rog xx

  6. Hi Karen,
    This is a great post but I have mixed feelings about it. I think sometimes the reason why people like the single woman you mentioned above can be negative is because they are deeply lonely and isolated and they need someone to talk to. We all have bad days or get negative/upset after a major setback where we moan about how unfair our illness is, we doubt we’ll get better, etc, and it can be easy for people like us who have supportive partners to wonder why someone would bare all their pain and sorrow so readily to anyone who will listen because we have a person to cheer us up when we need it. We all need positive people to be around and I am lucky enough to have friends who stuck around during the times when I have been very depressed and cried for days on end, etc. You are, however, completely right that firstly, it is not good for us to spend a lot of time with a lot of people who are being very negative, and I do also believe that it is not good for a friend to allow themselves to wallow. I hate it when someone will turn every single thing into a reason to moan about themselves or tell you how hard their lives have been. My partner seems to strike the balance right, he knows if I’m in really bad pain or having a bad day to let me moan but after a couple of hours, he’ll start challenging me- you know you’ve gotten better before, you’ve lost perspective, etc. And, I think it is a VERY bad idea to go anywhere near something negative when you are feeling negative, you need to read blog posts that encourage positive thinking for example. Lastly, sometimes I think that people who have had ME for a long time can be mistaken for thinking they’ve given up hope of recovery when really they have learnt about their limitations and are being realistic. When my partner and I made contingency plans, our family were very unsupportive because they thought we were giving up hope that I’d ever get better. We were actually just being realistic, at the time I was incredibly ill and it became clear I wasn’t going to be able to finish my degree so we put plans in place in case I didn’t improve within a couple of months-to a year. I did improve so those plans never came to fruition but it gave me comfort to know I had options if my health didn’t improve. For people on their own, there is no one to help them so it must be incredibly difficult to cope. When you struggle every day to manage then I can understand why these people feel negative. I’m not disagreeing with what you’ve said, I too find it very draining to be around negative people but I do have a lot of compassion for these people. For me, the only thing that has made me believe I could recover and look into exercise is hearing about other people’s experiences and seeing their recovery- I was the unbelieving friend at the time. I am willing to spend time with negative people (not a lot of time) but only if they have open ears.
    Sorry for the mammoth comment, it’s something I think about a lot so I have a lot of thoughts on it!
    Katie x

    • Hi Katie

      Wow – that is a lot of thoughts!

      Of course, some people are in terrible situations and have little or no support – which must be incredibly tough.

      We are all different and I can only share my own experiences. And whilst I did feel huge compassion for people in the group, acting on that compassion came at a huge cost to me.

      And yes, I recognise how lucky I am to have better health and to have a wonderful husband. Your partner sounds fab too!

      Take care lovely…x

  7. Ooo, not sure if my last comment posted (twas early and my peepers were not quite engaged). I was diagnosed only 5 months ago but, much like a dog with a bonio, have been endlessly searching for support as well as “the cure”… I consider myself very optimistic but indeed a lot of the forums are full of people who have no hope (and i don’t criticise this because people cope differently). Unfortunately, I’ve only found two people who are living their lives within the realms of their illness.
    I love that i’ve found your blogs; they make me laugh and give me hope that we will, with the right approach get to a better place. I never expect to return to the old me because I was burning both ends of the candle and this is the reason I’m where I am currently.
    It’s taken me awhile to realise the following:
    – You do need to cut out people who drain you. Regardless of good intentions being someones crutch is draining.
    – It doesnt matter how much you cram into your life; time will pass by at the same rate regardless of whether you’re living it “like everday was your last on earth”
    – that i hate it when people say “live everday like it it was your last on earth”
    – appreciation/mindfulness of this very moment is much better than trying to erase your past or imagine your future
    – the guy across the way often shaves his chest in the morning while im making a cup of tea. I wasn’t aware that he could also see me adjusting my boobs every now and again…

    Thank you for your blogs; please keep up the immensely enjoyable writing

    • Hey again Jo

      Your other comment did post – but what a treat to get two comments from you!

      This comment has made me laugh so much. I love your list: how often would you say you adjust your boobs?!

      Please come by again and make me laugh another time…xx

  8. I think your on the right track Karen but its also just as bad to be obsessed with recovery as it is to be obsessed with cfs. it still seems to occupy a lot of your thoughts. switch your perspective to something else.

    • You’re probably right Jim!

      I don’t write about (or think about) recovery all the time – I think this is the first post for a month about recovery. But I think because I am still on the Chrysalis Programme, it does mean I’m thinking about it some of the time.

      But yes, ultimate goal is to just live!

  9. Hi K,

    I had (have?) CFS for two years. I barely consider myself to have it anymore, pretty much only when I have a few nights of not sleeping. I can run, go rock climbing, and just got accepted to medical school.

    But ANYWAY, I was OBSESSED with reading CFS forums for the first year or so. And when I say obsessed, I mean every time I turned on the computer I HAD to go read those blogs. It was like some sort of weird addiction to reading train-wreck stories…. “Hi my name is ___ and I have had CFS for 127 years and I can’t walk to the bathroom” – I couldn’t take my eyes off of it. Couldn’t stop thinking about how that might be me one day.

    When I was writing my graduate thesis during my second year, I was considering a CFS-related topic. I went on a forum to ask what everyone thought, and to share my experience, and almost everyone told me that I must have never had CFS since I was nearly better (basically, a qualification for CFS is that you can’t get better. Nobody seems to see how illogical it is to classify a disease this way.) They also told me I was heartless to try to use them as guinea pigs.

    Anyway, your blog is one of the only ones I come back to these days. It radiates serenity and positivity. Go you.


    • Hi J

      It’s so great to hear how well you are doing – and well done on getting into medical school, how cool is that 🙂

      Aaah, yes the ‘you can’t have really been ill if you have got better argument’! I have been on the receiving end of that one too.

      So yes, let’s stay away from the train wreck stories and get on with living and rock climbing – actually, I’ll leave the rock climbing to you 🙂

      Good luck with your studies and thank you for sharing your recovery story – those are my favourite stories…xx

  10. Hi Karen!

    This is such an important post! Lessons can sometimes be very difficult when we are smack dab in the center of them. There are two takeaway lessons here to me:

    1. I call it the everyone’s-a-bad-guy syndrome. It is very easy for cops or prison guards to start seeing everyone and everything through the prism of who they deal with daily. When we immerse ourselves in a culture, we can very easily start to see the whole of life through that lens.

    2. There is a big difference between being friendly and being friends. Or maybe it’s better said this way: there are different kinds of friends. There are friends we see occasionally, perhaps at church or in some other group setting. Then there are the one-on-one hang out friends, people we invite over and are invited to visit with. We can be friends (friendly with) those who are negative and pessimistic irregularly while filling our social lives with positive, uplifting people.

    But don’t feel too bad about the 7-year lesson. I’m sure we’ll all be sitting on the rocking chair on the front porch of our lives one day and in our waning years we’ll still get struck by an occasional epiphany of insight into something we’ve been doing for many more years than 7! I suspect I’ll have some future post titled something like, “The 27 Year Lesson”!

    Thanks for the great post and the wonderful insight, Karen!

    • Hi Ken

      Lovely to see you here.

      This is such an interesting comment – thank you. And I like your perspective on the difference between being friendly and being friends. You will be glad to know I haven’t started being rude to people I find negative!

      And yes, my best friend and I were saying exactly the same, I am sure there are some lessons that will take much longer than seven years. I look forward to reading your post on The 27 Year Lesson!

      Thank you for coming by….xx

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