I am not a victim of CFS / ME. In the early days I was, but for some time now I have relinquished my victim status. I refuse to be a victim of anything in life, especially an illness.
I feel very passionately about refusing to be a victim of my life circumstances. It might appear to be a challenging thing to be a victim of a chronic illness but I view it as the easy road. Why do I say that? Because NOT being a victim of an illness, despite having that illness, is a much harder road to take, but like many things in life that are more difficult, it is much more rewarding. To be a victim is to give away my power. SomeTHING has done something TO me, and I can’t do anything about it. I am the poor, defenseless, little victim.
But as a non-victim, as a passionate liver of life who happens to have an illness, I am not weak or defenseless or helpless. I am empowered to live life from a powerful context and in my world that means that I creatively and powerfully manage the symptoms of my illness, very rarely asking for sympathy from anyone. I ask for empathy, but not sympathy.
Being a victim is just a context, so I can choose to change it, which I have done. I resist the temptation to describe myself as a CFS sufferer, although sometimes in my blogs I will refer to “sufferers” for want of an alternative, more empowering word. You will often see me refer to “people with chronic illness and pain”. That is a much longer way of saying chronic illness sufferers, but in calling people that, I attribute weakness and powerless to them – and struggle. And although I sometimes do find it very hard to live with CFS and the other illnesses associated with it, I choose daily to let go of the struggle. For when I struggle, it is more resistance, and I know from many, many experiences the truth of the saying “what we resist persists”. So I don’t often use the word struggle either when referring to illness, although sometimes I use it as I know it resonates with those who are living with chronic illness and pain.
Wouldn’t it be great if there was another word other than victim – another word that meant people living powerfully with illness and pain. Maybe we could be chronic illness livers (maybe not! Makes me think of a bodily organ!), or chronic illness warriors. I like warriors. It implies fighting, but it has a positive, heroic connotation. I love Laurie Erdman’s Chronic Wellness Coaching site where she refers to Chronic Wellness Superheroes. What a great name? Could we all be chronic wellness superheroes – always on the path toward wellness, focusing on moving forward, not staying stuck where we are. Or maybe chronic wellness warriors? CFS warriors? CFS heroes? CFS champions? CFS gold-medalists?
I don’t know. But what I do know is that when we get stuck in victim status, we can unconsciously become comfortable, and even encouraged to remain a victim. Because, whether we like it or not, there are pay-offs to victimhood. When we are a victim, we get sympathy, we get concessions, we get extra time, extra understanding, often extra money from the government. And usually we deserve every bit of these. But it also makes it scary to give up our rights to all these things by saying no to victimhood. A non-victim does not want sympathy, they want empathy. A non-victim wants support, they don’t want someone to do it all for them. A non-victim doesn’t want people to feel sorry for them, they want people to believe in them and their ability to manage their illness powerfully. A non-victim is not in a fight or a struggle with the illness they have, they accept the illness and powerfully choose to move forward in their lives, anyway they can. A non-victim has not given up on finding a cure, but they don’t let their illness define who they are as a person. They let their passions, dreams, goals and achievements, along with who they are being in life, define who they are as a human being.
In my view illness is just another part of my life I have to manage, like the electricity bill, my daughter’s upbringing, my budget and my relationships with the people I love. Sometimes the people I love seem invested in me staying a victim because that is how they are accustomed to relating to me. By me stepping away from my own victim status, I no longer fit in with the picture they have of me and that sometimes makes them feel uncomfortable. Us human beings like to feel comfortable, so when our loved ones feel uncomfortable with our changed status, they naturally want to pull us back to the role they feel safe and comfortable with. That is not their fault. I know in my case, with less knowledge than I have now, I unwittingly encouraged people around me to treat me as a helpless victim, because for a long time that’s how I felt. Now I choose to see myself as an empowered, strong, capable woman managing many things in my life with grace, humility and success, including the CFS, electrosensitivity and pyroluria (I may fail often to maintain this, but it’s something to aim for at least!)
“I am woman, hear me roar” was Helen Reddy’s catch-cry of the 1970s. “I am a CFS warrior, hear me roar” could be my catch-cry … and maybe it could be yours?
Refuse to be a victim. It takes away your power. Stand tall, hold your head high, rise confidently (even if it’s metaphorically as you lie in bed) and say, yes I have CFS and I manage it powerfully (and then collapse dramatically on the floor and await the applause … oh, sorry, giving up the drama is a topic for another day 😉
Keep Smiling
Louise
Podcast: Play in new window | Download (Duration: 9:18 — 8.5MB) | Embed
Subscribe: Apple Podcasts | RSS
Annys Blackwell says
Great, Louise. It makes you wonder what thinking of ourselves as victims does for our health. And if we identify as victims, what does the idea of becoming well mean for us? (Obviously, there are those of us for whom that isn’t realistic)
Louise Bibby says
Yes Annys. Great questions/ponderings. I really do think our mind and body are inextricably linked (it’s not like they’re separate entities!), so our thinking MUST affect our health. I find that viewing myself as a victim is so disempowering it really affects my mental health, which loops around and then affects my physical health (because when I feel down or depressed I don’t/can’t look after myself as well, and the spiral of depression can easily take hold).
I’m not saying I NEVER feel sorry for myself and feel like a victim. I definitely have my moments. But I also know that remaining in that state of thinking doesn’t serve me, so I’ve learned to pull myself out of it. But sometimes I need to wallow for a little while before I can do that.
Ultimately a victim is at the effect of their circumstances, which means they feel they have no power. There are payoffs to that (which some would argue), in that when you’re a victim very little is expected of you and you often get sympathy. But sitting in that space too long is never a nice place to sit (not for me anyway – powerless never feels good!).
I think that the answer to your 2nd question of what identifying as victims means in relation to becoming well is that, while we’re still identifying as victims, it’s less likely we WILL ever get well because, as Dr Brown says, we would have to give up claim to our uniqueness of being the victim of a terrible illness that’s worse than everyone else’s. Saying that, I know of people who’s illness IS probably worse than everyone else’s, but they don’t identify as victims. That’s the point of my blog. We don’t have to identify as victims, even if other people WOULD identify us as such!
Thanks for putting those thoughts forward. Obviously I’ve enjoyed exploring them further!! 😀
Keep Smiling
Louise