"Be Strong" - Emotions & MS
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| Copyright: C King |
When I reflect upon my MS journey, it is tinged with a little sadness, which is only human after all, given the long journey we have spent together. MS brings about many emotions and depending on the day, MS isn't at all on your radar or it can weigh heavily on your mind.
There are many reasons why MS can be such an emotive topic.
We don't know what will happen
Emotions: confusion, depression, hopelessness
No one can really say what will happen in their future, but for someone with MS, this concern is borne out of a very specific piece of knowledge about ourselves, and no one can tell us what will happen with any certainty. Many of us with Relapsing-Remitting MS find the unpredictability of MS difficult to digest. With friends, family colleagues, this hits us twice - both in our dealing with this emotion in ourselves and in others.
We're not what we used to be
Emotions: Anger, resentment, disappointment, sadnesss, frustration
It's very normal for anyone to look back at their youth and feel sadness for bygone days. With MS, it's frustrating realising how much things can change in just even a year. Frustration can lead to hopelessness and depression. The advice provided is often a very polite version of 'get over it', however no one would say that to someone grieving. What people don't understand is that you are grieving for someone: you. Or rather the version of you that was full of intention now, frustratingly, is sometimes restrained when making life plans.
We don't get support as soon as we need it
Emotions: Feeling lost, fight, fear, panic, inarticulation
When relapsing, the medical profession can be slow to respond, both in diagnosis and in treatment. Often, the treatment relates only to physical symptoms; there is very little support or steer for mental health. With relapses, you can be left for days, weeks, even months without appropriate care in which you can feel lost; this can feel very isolating. This is made more complicated when different departments or professionals refer you to each other, feeling like you're in an never-ending, non-progressing limbo. Often, you have to repeat yourself which can be exhausting. In this scenario, it is difficult to push and challenge, when that's exactly what is needed.
We run out of fight
Emotions: guilt, defeatism, overwhelmed, letting the bully win, loneliness
We sometimes refer to ourselves as fighters or MS 'warriors'. Some hate that terminology. Whatever you wish to call yourself, all of us at some point lose ourselves. We all feel overwhelmed and defeated. The MS bully wins, and just like bullies of any kind sometimes, we have to yield.
Sometimes, we feel on our own
Emotion: guilt
There is an inherent need within the community to worry for those around us, as if just being around us causes catastrophic consequences. We feel guilt for the way those around us have to bear the burden of a condition that none of us asked for. We most exhibit guilt when it comes to our children. We worry that they'll be the 1-5% diagnosed, that they won't become resilient adults, that one day they'll be our carers. The truth is that whilst this is not impossible, it's also very unlikely. The truth is that they will turn out to be empathetic, resilient young people, however logic doesn't help the deep-down fear that comes with the guilt.
That was a pretty tough read, wasn't it? Interestingly, there are days when having MS also brings about emotions that energise you.
Emotions: Relief, contentment, appreciation and acceptance
This sounds very zen but it's true. Having a chronic condition makes you very grateful for what you have. Diagnosis can sometimes even be a relief, especially after a long period of uncertainty. Sometimes, it's easy to see a glass half empty, say when you're in pain, but if we allow ourselves time and perspective to take a step back, we can identify the small things that motivate us. Sometimes, even acknowledging the MS it gives us some finality.
Emotion: Resilience
Living with MS tests your resilience from time to time. I was once told to "be strong" by a family member when speaking about mental health. I have never heard something so damaging. Every day, I am strong. I'm strong for getting up for work, strong for preparing my son for the world, strong for enduring pain that would stop others in their tracks. Strong because I bear the passive judgment of others, speak up about MS and more important than anything, I help others realise that all of the above - and I mean literally everything I've mentioned - can be overcome with time and the right level and kind of support.
Emotions and community
I have never met a community so simultaneously different and yet so connected by this condition. Although we've been thrown together through a circumstance none of us would choose, there is a camaraderie, a connection. I don't know what I'd do without the daily interactions of communities I belong to.
Emotions: Relief, contentment, appreciation and acceptance
This sounds very zen but it's true. Having a chronic condition makes you very grateful for what you have. Diagnosis can sometimes even be a relief, especially after a long period of uncertainty. Sometimes, it's easy to see a glass half empty, say when you're in pain, but if we allow ourselves time and perspective to take a step back, we can identify the small things that motivate us. Sometimes, even acknowledging the MS it gives us some finality.
Emotion: Resilience
Living with MS tests your resilience from time to time. I was once told to "be strong" by a family member when speaking about mental health. I have never heard something so damaging. Every day, I am strong. I'm strong for getting up for work, strong for preparing my son for the world, strong for enduring pain that would stop others in their tracks. Strong because I bear the passive judgment of others, speak up about MS and more important than anything, I help others realise that all of the above - and I mean literally everything I've mentioned - can be overcome with time and the right level and kind of support.
Emotions and community
I have never met a community so simultaneously different and yet so connected by this condition. Although we've been thrown together through a circumstance none of us would choose, there is a camaraderie, a connection. I don't know what I'd do without the daily interactions of communities I belong to.
We're all allowed to not be okay. If you have the odd day here and there on which you feel down, don't kick yourself for it. If you're feeling strong emotions that are more at the surface than usual (e.g. angry, teary, feeling hopeless) and last a while, I would be remiss if I didn't suggest you get the support you need.
We all have blips; there's no shame in it. We all need the tools to get through, and if we don't have them then a psychologist can help you develop these tools. If appointments take a long time to come through, and you need more urgent support, all of the major MS organisations have helplines. MS-UK has a counselling service. There are also organisations like MIND and the Samaritans.
Don't worry about being strong, stay well - look after you and you'll be in a better place to look after everyone else.
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