Cherelle and Elisha: dealing with uncertainty and MS
The theme for this year's MS Awareness Week is uncertainty. Ahead of their Instagram Live, Cherelle and Elisha talk about how uncertainty affects them.
How does living with MS make parts of your life uncertain?
Cherelle: MS makes parts of my life uncertain in ways that’re sometimes hard to explain. But I think it affects everything. I think about work and my responsibilities. And I worry about being able to progress into leadership roles. I also worry about starting a family and finding someone who’ll understand my MS. It’s also hard to plan for things like milestone birthdays because I don’t know if I’ll even be able to attend.
Elisha: At the moment, MS makes moving forward in my life uncertain. Employment options – what will I be able to do? Dating – should I tell them about my MS? Or the one close to my heart – will I have children? Life is uncertain in general. But knowing you have such an uncertain condition adds another layer of uncertainty.
Read more about pregnancy, birth, breastfeeding and MS
Can you think of a time where your MS got in the way of plans/an event/a special occasion?
Cherelle: Right now, I’m really worried about planning my birthday party. Most of my friends and family are based in Birmingham and I live in London. So there’s a lot of back and forth going on.
Elisha: I’ll start this answer with ‘lol’, yes. MS rears its head for every plan, event and special occasion. It lets me know it must be considered. For example, fatigue likes to strike anywhere and everywhere. So I try and schedule breaks for a nap so I can be more energised for the event.
How do you cope when plans have to be changed or cancelled?
Cherelle: Honestly, I don’t always react the same way. But it does make me feel low and anxious when I have to cancel or change plans. I sometimes worry about what people think of me or if they blame me. Or if they think I’m flaky and unreliable when it’s my condition that’s unpredictable.
At work, I get emotional when I have to call in sick. But I have to remember not to be so hard myself. Especially when my walking or balance is affected as I don't have a choice under those circumstances.
Read more about working and MS
Elisha: I tend to cope quite well as I know there’s always a possibility it might happen. I talk about my feelings whether it’s through Instagram, poetry writing or meditating. Coping may also look like just resting with a good few episodes of Friends. Or it could just be taking time to recoup – I know my body will thank me.
How do you explain uncertainty to people without MS?
Cherelle: I think people need their own unique approach to explaining uncertainty with MS. I think it’s important for us to normalise having conversations where people share their uncertainties and how they make us feel.
These conversations are important for people who don’t have MS but want to learn. They can see the spectrum of people’s experiences with MS and really treat us as individuals. Our needs and wants are different which means our uncertainties will be different.
Elisha: In all honesty, with a pain in my heart, lump in my throat and eyeballs glazed over with tears waiting to be released.
My situation is so uncertain. So how can I ever really explain it to others? I tend to keep things short and honest “What you see me do today, I may not be able to do tomorrow. My fellow people, that’s what you call uncertainty”.
What would you say to people who struggle with uncertainty?
Cherelle: I think I’d like to remind people not to blame everything on your MS. I believe what’s aligned with your life’s journey will not pass you by. And what doesn’t happen maybe wasn’t a part of that journey.
The Serenity Prayer also comes to mind. The part that says “God, grant me the serenity to accept the things that I cannot change, courage to change the things that I can and wisdom to know the difference.” This has helped me to get by.
With no cure and no explanation for how I got MS, I have to accept the fact that I live with MS. But I’m not defined by it and life must go on. So make the plans, continue to be ambitious while living in the moment as much as you can.
Elisha: Don’t allow MS and uncertainty to consume your life. Turn your lesions into options, choices and other experiences…then nap, lol.
Find out how to join Cherelle and Elisha's Instagram Live
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MS is unpredictable and different for everybody. This MS Awareness Week (25 April-1 May 2022) we shone a light on uncertainty and MS.
We shared stories from our community about dealing with uncertainty.
Get in touch to share your story.
