When I first published my book and started my website, one of the most common bits of feedback I received was “This guy really understands what it’s like to have ME/CFS/Fibromyalgia”. Some of those responses were quite emotional!
Well, having been ill with it for nearly 7 years, of course I understood. And I, like everyone else, felt that amazing relief and validation when I first spoke to other people with the illness, even though it was very late in my journey, about 6-7 years after I first got ill.
There is something amazing in hearing someone else experience the same frustrations, the same injustices as you have. Because no matter how much you try to explain what you are going through, other people simply don’t truly understand. They cannot understand, because their whole frame of reference is on a completely different plane! What they describe as exhaustion or pain would often be like relief for us.
And nobody gets what’s it’s like to suffer day in day out, week in week out. Nobody gets how this affects you when months turns into years, NOBODY, probably not even YOU! That’s something I only realised long after recovering!
This was highlighted to me again recently, when I interviewed someone that I coached to recovery after 15 years of illness. We looked at some footage of himself discussing his illness and experience a couple years earlier, and he started to cry. When I asked him why, he explained how he could see the suffering he had been experiencing, he could see how he was trying to hold it all together back then.
But of course we feel we know how much we suffer. After all, we experience it every day, right? Well, I personally don’t think most people really realise the real extent of it, whilst they are still sick. Let me explain what I mean by sharing some of my own experience.
During my years with ME/CFS/Fibromyalgia, like most people, I tried my best to live some sort of normal life. And so on my ‘good’ days (when I was not experiencing a flare up), I would try to do the normal things that other people do with their families. One of these was going to a local amusement park SeaWorld, where the kids could enjoy the animals and the rides.
It was about a year after I had recovered, I had been very busy with work and doing some heavy duty work around the house, when we got tickets to visit SeaWorld again. I was very sore and tired that day, LIKE A NORMAL PERSON, due to the physical work around the house. As we spent our day having fun, doing all the usual things, it felt like it was my first time there. We just had such a great time with the kids, making every little experience like some grand adventure.
But as I walked that familiar ground of the park, including the queues, I suddenly realised the true extent of my suffering all those years. Because even though I was tired and sore from all the work around the house, the whole thing was of course completely easy. Easy to walk through the park, to line up, to enjoy! Easy to sit down, stand up, to check the map, everything was easy.
Sitting on a particular park bench, I suddenly felt a sense of déjà vu. I connected strongly with the emotions and feelings I had experienced all those times I visited in my sick years and as I did so, I felt a wave of emotion flooding over me. I realised just how hard it had been to do anything, even during my ‘good’ days. It was only the contrast of the ease of doing things now, that showed me the true depth of my difficulties during those years.
It was a strange feeling, as I kind of felt very sorry for ‘that person’, that former me who had dragged themselves around, looking every moment for some respite. “Where I can I sit down?” “What can I lean against?”. “What should I eat or drink to get through the day?” “How much longer until we go?” “How far do I have to walk next?”
There was little joy in any of that, I was suffering so severely by simply being out of the house. I realized that I had been so distracted by trying to hold things together back then, that by simply trying to cope all those years, I lost my frame of reference for what was reasonable.
I realized that I had pushed myself beyond anything that anybody would have thought was reasonable. If a healthy person suddenly experienced what I was experiencing back then, they would not drag themselves on trying to be normal, but would have lied down and maybe called an ambulance.
The question came up “Why did I push so hard?” I had worked so hard! I had tried so hard to maintain some semblance of normality – and it had cost me so much!
The realization of what I had gone through really hit home. I knew it was difficult in those years, but suddenly I had a whole new perspective about them and I felt a deep sense of grief about myself for having to suffer through all that.
This realisation is not unique to me, I have seen it in many other people that recovered who were sick for longer periods of time.
I realized that if I could go back to when I was ill and speak to myself, I would say – “don’t try so hard Dan”. I would say “it’s OK not to be able to do things” – “it’s OK to just rest”.
I realized though, that I had given up any hope of significant improvement or recovery; that I thought that this, as bad as it was, was as good as it was going to get. If this was as good as it was going to get, if nothing was going to change, then I was going to do my best, even if it cost me greatly, to lead as much of a normal life as I could. The pull to maintain any semblance of normalcy was terribly strong.
It’s not just the physical stress. It’s also the mental stress; the worrying about how it will turn out; the fear that I might get worse or might never get better – the fear that I might be this way for the rest of my life.
If I had known that recovery was possible, though, if I had known that there was an end in sight, then perhaps I would have given myself more of a break. Like when you have the flu, you just take a time out.
But when you think there is no end in sight – you just push on don’t you? And as you do so, over time, many (if not all) of us simply lose perspective of what normal is. We get so focused on holding it together and doing what we can and trying to get well, that we never get the opportunity to step back and look at our experience objectively. Most of the people I have spoken to, seem to only realize the full extent of their experience after they have recovered.
But if you really feel like you are in the doldrums right now, then perhaps your best step forward is first to find a way to feel a little better, a little more hope and to feel a little more able to cope. And reaching out to a counselor or friend may be your first step.
Having lived with the illness for years myself and having seen others get stuck in these awful low places, I wrote a little book called Discover Hope : 34 Steps To Find Hope and To Cope with Chronic Fatigue Syndrome & Fibromyalgia. It’s a short easy to read book that could help you find a more positive place from which you can hopefully start taking action to improve your health and your life. So if you’re feeling a bit low, then hopefully it can give you a little boost and help you change your perspective.
The book can be read on any computer device using the kindle reading apps, and is available for free from time to time from Amazon (currently free from 12th May 16 to 14th May 16, you can check the link to confirm the next free dates).
Simply check my website here for more details on how to get it.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.