“Pessimism becomes a self-fulfilling prophecy; it reproduces itself by crippling our willingness to act.” Howard Zinn
How can we stop ourselves from being pessimistic? Language used about illness is more important than you might think. Professor Jelinek talks about this at length in step 4 of the book Overcoming Multiple Sclerosis (p.258). The way we feel about the illness, and how we refer to it, has an influence on our outcomes. Positive outcomes through positive thinking can start with positive speaking. (Read more about the mind-body connection here.)
Words have power and emotional connotations - exploring these connotations can help us to explore our feelings. Why do we choose to use certain words? Why do we avoid other words? Choosing to use alternative words can help us to reframe negative thoughts.
Three elements George talks about in the book:
Patients are ill. If people see themselves as ‘suffering’ they will allow themselves to suffer. Don’t allow the illness to dominate you and become a sufferer.
At Overcoming MS we use "person with MS" or "pwMS". We avoid using words like "disease" or "illness" and prefer to refer to multiple sclerosis as a "condition" to live with. This encourages you to take a more active stance and make necessary lifestyle changes.
Taking ownership of MS by referring to it as "my illness" or "my MS" can be problematic. Think of MS as a condition about which you are actively doing something. You don't want to end up adopting it or needing it. Focus on other more productive areas of life.
MS is a manifestation of an imbalance in your body. It is not some outside invader like malaria or a virus. All the cells involved in MS are your cells and part of you. It makes no sense to fight yourself. It’s not about fighting, it’s about healing.
We also discourage thinking of words such as hopelessness, impossible and decline. This encourages feelings of powerlessness and diminishes a sense of control.
Some words and phrases we encourage instead: hope, recovery, doing whatever it takes, better health, improved quality of life and healthier living. Think of our name and our tagline: Overcoming MS is possible.
You need to be the captain of your own health ship. Take a positive and proactive stance to improve your outcomes. Using the mind-body connection is a critical part of getting well, of recovering, after a diagnosis of MS.
We asked ‘Which words would you like others to avoid while speaking to you about MS?’
Ultimately this is a personal option, but we’d like to explore these thoughts in this blog post, in particular by sharing some points of view from the OMS community.
This was in response to a poll that a cancer charity in the UK had shared where respondents expressed their dislike for terms such as "hero", "battle" and "warrior".
I find "suffer" challenging. It is disempowering and suggests that the word "sympathy" or "pity" goes along with it instead of "empathy" or "manages", "lives well with". It's also about being kind to yourself. "Fighting" for life in general doesn't help anyone. It's actually perceived as a negative. Also with MS, you simply don't always have the energy to "fight". Do the best you can with what feels best for you and your body. Have compassion for yourself. It also depends on the context with MS in relation to which descriptors are used. Being that its an invisible disease makes some, without the knowledge of the disease, disbelieve the diverse discomfort and life changing challenges that are/can be experienced as an individual living with a chronic condition.
It’s good to feel into how language makes us feel and respond but I don’t think we can censor words in general use as it is so individual isn’t it? When we embody words that feel powerful and inspiring to us, that can really connect us to our inner strength and previously untapped energies inside us. Personally, I find the word “warrior” powerful. Warrior energy has been described in all sorts of ways throughout time as an energy which says “I may get beaten down, but I rise again” or “I will stand up for myself and what is true to me”. Everyone, I believe, has this spirit inside them but when we are ill we may have to dig deep to find it. I have found my warrior spirit very empowering and it has allowed me to nurture myself in ways I could not before I found it. But it is very personal. I don’t personally like the MS-Monster type language I have seen written which vilifies MS. I live with MS 24-7 - I don’t live with a monster, I live with it as my teacher and guide to my self care, self nurture, self compassion and thriving.
Personally, I don't like any of those "fighting" words. Like others, I think those type of aggressive words paint a negative picture... I prefer something like, "Living well with ms".
I agree with that - the "fight vs cancer" line is great for fundraising but unhelpful as a healing metaphor. I remember being strongly drawn to the title of "Taking Control of Multiple Sclerosis" because the idea of taking some control over the disastrous, damaging process that I could feel harming me was very powerful. I recently had a shift in thinking about how I live with my MS. Like others, I am "living well with MS" and am taking a compassionate attitude toward this dis-ease. I am engaging in diet and lifestyle (& taking medication) changes to put my body at "ease."
I'm living with MS. There's no cure, so I'm not fighting anything. I'm dealing with it the best I can and adapting as I need to. I can't even really say I'm "living well with MS" because I'm not. I'm on disability, I have what used to be called progressive relapsing, I know I'll continue to get worse and my list of everyday symptoms is very long. So I'm just living. Some days are ok, even great, and others in definitely struggling. I just roll with the punches.
I don't see myself as a particularly strong person, I would never call myself a "fighter". Honestly, I don't even feel like I'm coping... With that in mind, I kind of feel like I am being put down or shamed by people who use these words... Sort of like I'm not good enough because I am weak, or lesser than them because they have a strength that I do not possess?
I "work" with my MS. It’s so debilitating to fight it. I find it far more positive and calming to accept that it is what it is, and then to say to oneself “ok, so what can I do about it. How best to make the best use of it.
This all feels very constructive and useful. Seems we all like to think of living with MS, managing MS, controlling MS, understanding MS.
I like the terms "overcoming" and "recovering from" to describe my relationship with the disease. I don’t like to call it "my MS" either - it is not a possession or a pet!
I hate it when people say “sorry” when I tell them I have MS. I don’t see my MS as negatively as they do. I live with it and manage it as best I can. It’s not the end of the world.
I find that ‘consciously controlling my multiple sclerosis’ works for myself and my limitations.
Personally I find the word "fighting" negative. Fighting against something, whatever it may be, takes a lot of energy. My body needs all its energy. I also really don’t like to call it "MY MS". Whilst I understand MS is different person to person and that is why it gets this My. I feel MS still is MS and I don’t feel like I want to own it like a car.
I tolerate it. Changed my lifestyle because of it. It is an inconvenience (big time) and I make the best of it. Inspiring
We "manage" so many health ailments, why not MS? Manage makes me think taking control, taking stock of what’s working, what could improve. Moving forwards positively.