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?!)