For MS Awareness Week, MS-UK counsellor Leila Hancox discusses learning to accept the limitations and possibilities of MS
On receiving a diagnosis of multiple sclerosis (MS), we may be tempted to try and carry on life as normal if our symptoms allow us to do so. To try and forget that we are living with a life-limiting condition and imagine that it has no bearing on our lives that need worry us.
Maybe work has always made us feel good about ourselves and we’ve spent years investing our time, energy and resources in becoming experts in our fields, so to take our eye off the ball in this regard would be unthinkable.
Or we dedicate our lives to various sporting pursuits such as mountain biking or running and nothing will stop us from pushing ourselves even further towards our next target, whether hill or dale, trail or treadmill. Or we pride ourselves on being the friend or family member upon whom everyone else relies, the one who gives support wherever it is needed but asks for nothing in return, because we are the strong ones who shoulder whatever gets thrown at us. That’s what we’ve always done and that’s who we are.
Then one day we receive a wake-up call. A relapse or a new symptom that turns our whole world upside down as we knew it before. Fear and confusion take over that we may never again be able to do the things that made our lives worthwhile. For then who will we be and how will we cope?
If we are feeling overwhelmed then we may do well at this point to prioritise our safety and security rather than immediately try to come up with solutions. Listening to our bodies is obviously a vital part of this process. What may also help with our physical symptoms and with our general sense of wellbeing is if we are able to pay attention to what is going on for us in terms of our thoughts and feelings, rather than getting caught up in every-day distractions. This can be difficult if we are not used to reflecting in such a way or we believe that we should be able to cope by ourselves, or that it is a weak or indulgent way of doing things. Yet if we fail to use our full range of resources then we stunt our ability to understand the implications of our new situation for our lives going forwards, and to adapt in ways that are helpful, both for us and those people closest to us.
Although we can help ourselves take stock by reading books, listening to music or whatever it is that helps us tune into our personal resources, we may benefit further by reaching out to other people or organisations, whether that be for information, practical or emotional support.
Ask for help
It can help to tell someone, for example a counsellor, who listens carefully and understands when we tell them what it is like to live with a particularly difficult symptom. Perhaps we struggle to communicate with those closest to us in our lives because we don’t want to burden them. We may give up trying to explain to colleagues why we need help with a particular task because they just don’t get it. The act of opening up to another person in this way can help us to feel less alone and isolated and therefore better equipped to find a way forward. It can also help us deal with uncertainty, especially if we can remember our strengths and together come up with ways of coping when things get difficult.
Acknowledging our vulnerabilities is an important part of taking stock. Perhaps there were things about the way we lived our lives in the past that didn’t work particularly well and don’t stand up to scrutiny now. Being viewed as the strong or capable one, for example, may have prevented people from getting to know who we really are whether that be friends, relations or a romantic partner.
A wake-up call
MS may be the wake-up call that we need for re-evaluating our lives and reconsidering what is truly important to us in order to find long-term fulfilment and hope for the future. That’s not to say that things will be easy and there won’t be obstacles along the way, whether that is to do with MS or more generally whatever life throws at us. But if we spend some time reflecting on what we truly need to help us cope with the challenges ahead, and what we think truly matters, then we are in a good position not only to survive but also to thrive in ways that previously we might never have thought possible.
MS-UK has launched a crowdfunding project to raise money for video counselling to improve the mental health of people living with MS. If this blog has helped you, make a donation to our crowdfunding page, so we can help to improve the mental health of even more people living with MS.
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