I was chatting to someone on holiday who’s recently got over cancer. We talked about how the original diagnosis is a hard thing to get your head round but what about the aftermath? What happens then?
She also told me about her friend who has recently been diagnosed with MS and is finding it hard to deal with, shutting herself away and becoming isolated. I remembered my own diagnosis 6 years ago and how my reaction was very different. I refused to think about it and was adamant that no one should know, feeling that if people didn’t know I could pretend it wasn’t happening to me.
It’s easy to pretend it’s not happening when your symptoms are very slight though and you can still do a work out in the gym for an hour or swim 30 lengths of the pool! A reduction in mobility has definitely forced me to look MS in the eye and face things as the alternative would be to stay in bed all the time!
All this got me thinking about the stages we have to go through to come to terms with difficult life events and how you can’t force people to accept what’s happening to them unless they’re ready to do so. This is similar to the cycle of change I talked about in a previous post, “trainer heal thyself”, and how people can’t change their behaviour unless they move from one stage to another in their own time.
On the website, www.betaferon.com/my-life-with-ms/diagnosis-and-what-happens-next, it describes the stages and how people move through them at different rates.
Firstly, there is shock at diagnosis, which I also understand from reading various blogs can be experienced as relief if diagnosis has taken a while. I remember bursting into tears and staring incredulously at the consultant as he waffled on whilst showing me an image of the inside of my brain! I then bought 10 cigarettes and smoked nearly all of them on the way home.
Next, comes denial which I was particularly good at! I mentioned that I didn’t want people to know and I don’t know why this was so important to me. I was afraid people would see me differently, write me off or decide my prognosis without properly understanding my condition. I struggled with this for a while and only faced up to it at work when I was caught out! I was unaware that both my bosses were walking behind me and watching me literally drag my leg along with me! I was in such denial that I didn’t think to have a few days off with that particularly obvious relapse! I made everything harder for myself through not owning up. I spilt the beans later that afternoon and my bosses were brilliant, falling over themselves to engage occupational health to see how they could help. Instead of losing my job, which was what I was terrified of, they arranged a parking space at the office and moved my office base to cut down on travelling time. I still insisted they kept it to themselves though.
The next stage is fear and this is something I can also relate to, especially when I wake up at 5am and worst case scenarios swim around my head. According to www.betaferon.com/my-life-with-ms/diagnosis-and-what-happens-next “Fear, however, may even destroy more quality of life than the actual MS symptoms do. Fear may pop up repeatedly in the course of the condition, having to be dealt with over and over again.” I feel fear the most when I have an appointment or engagement in a place I’m unfamiliar with. Will there be parking? Will there be stairs? Will I fall over? Will there be a toilet close enough? Will the toilets be upstairs? This is why job seeking is virtually impossible for me (see blog post “redundancy and disability”) I’ve worked myself up into a frenzy before, with trembling knees and a thumping heart exacerbating MS symptoms. There’s also the fear of the condition itself, fear of prognosis, fear of the future Bla bla bla.
The penultimate stage is grief. Grief for everything you’ve lost and can never do. Grief for the life you could/should have had without MS. As a mother of 2 small children I’m wrestling with this at the moment. My son started school and I can’t hang out with the other Mum’s in the playground, we can’t go on long walks as a family, I can’t take them swimming, I can’t take them to the park, I can’t go shopping for them or cook them dinner, we can’t go camping. With this also comes guilt. Other people have to help me bring up my own children and I swing from being grateful to being resentful depending on my mood or how many glasses of wine I’ve had (see blog post “trainer –heal thyself”) Everyone must have their own version of the above and wallowing in self-pity is so tempting.
This brings me nicely to the final stage and that is acceptance. www.betaferon.com/my-life-with-ms/diagnosis-and-what-happens-next says “Most people with MS sooner or later digest the barrage of bad news following the confirmation of their condition. The personal conclusion as a rule is the eventual acceptance of MS and the realisation that we all have our burdens. It is important to remember that “acceptance” does not mean “giving up” or “admitting defeat”. Learning as much about the condition as possible and engaging with other people will help you accept what you cannot change”.
The cancer survivor said to me, “there’s no point in thinking “why me” because “why not me”” and this is a statement I agree with and it keeps me strong. I have so much to be thankful for and I’m still alive and kicking (but only on a good day!)