My MS Bully and Me

Copyright: C King I t's been very helpful to put pen to paper on a topic I strongly suspect others may relate to.  Ghosting: You may not be familiar with the term, but you're sure to have been ghosted in the past. It happens to many people. Firstly, if you have never heard of it, it's a verb. What is ghosting ? Lexico defines it as "The practice of ending a personal relationship with someone by suddenly and without explanation withdrawing from all communication." I wish it also added something like "you're an idiot; you don't deserve my friendship" but apparently that's not allowed, or something! (pah!) Note this says 'personal' relationship, as anyone you know can ghost you - your friend, someone you're dating, a colleague or family member. To clarify, we all lose touch with people over the course of our lives, but that isn't ghosting . The difference here is that ghosting is intentional. It's a sudden, cons...

Oh God, I've forgotten to buy the brussel sprouts and the world is about to end! Alright, which one of you moved the French baguette? What do you mean, you’ve eaten it?! That was for the Christmas MEAL! Okay, okay - I think I still have the bread machine somewhere. Flour, check, salt, check, yeast… where did I put the..? I. Don’t. Have. YEAST! (As you hyperventilate, you momentarily consider packing a bag and buying a last-minute one-way ticket to Spain. No one will notice.) In principle, those with chronic conditions love Christmas as much as anyone else, but the reality is that it can be anxiety-inducing and energy-draining. This isn’t just about the panic that descends upon our houses over a twenty-four hour period. It’s also about the fatigue brought about through entertaining others, the overwhelming – and growing - number of tasks leading up to and on the day, the need to create the perfection that is kids’ Christmas, and the aftermath in the subsequent few days that kno...

I was recently invited to write a guest blog for The World vs. MS, and I really enjoyed putting these thoughts on to paper. It made me reflect on my own disclosures over the years and how I've honed this into two kinds of conversation - a more in depth one with my manager and my 'elevator pitch' for more opportune, or unplanned, conversations. Updated September 2020: Reproduced with kind permission from @MSOnetoOne_EU (formerly TheWorldvsMS) as we feel it may be useful to others. Telling People at Work About Your MS So, you’ve been diagnosed with Multiple Sclerosis and, along with all of the emotional turmoil that comes with being diagnosed with a life-long condition, you’re also worried about work. The majority of MS diagnoses happen when people are in their twenties and thirties; a time when you are likely to be at an exciting point in your career, and possibly becoming technically expert in what you do. It is, therefore, completely natural that work will feature i...

With Shift MS, I've made a number of videos around disclosing MS and where to get support. This is my next instalment - I hope you find these useful! If someone decides to disclose there MS at work, how can they prepare for that conversation? https://www.youtube.com/watch?v=qkIRupT2JVU&t=3s If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme

When I think of health disclosure in an employment situation, I think of it in two parts (three if you consider the prep beforehand): the conversation and what happens next.  Before you begin your prep, consider the following: Are you ready? If you're newly-diagnosed, do you need more time to absorb the information? If you're ready to discuss your condition, do you feel confident and if not, what will help you feel ready? The person you are disclosing to is human and may have a human reaction to your news, even if it's not quite what you were expecting. You've lived with this knowledge for a while, they for the last few minutes. What, if any, support do you need to do your job as effectively as you can? What will give you the same fighting chance as others without your condition? Provide reassurance on how you're managing your condition at work. For example, if they are able to make reasonable adjustments, what are you also doing? Are there questions they...

The Equality Act 2010 (UK) says that in order for your health condition to be covered, it must have a long-term and substantial effect on your daily life, which is why those of us with MS are included (even if the impacts aren't obvious to others), as MS is classed as a progressive condition. The Act covers us from the point of contact with an employer to when we're in the workplace. Once you've told someone about your chronic condition, the natural follow-up question would be to look at your needs. Before any conversation around your needs takes place, I really recommend taking time to reflect and to research. Read one of my very first posts about disclosure as background. If you don't know where to start, perhaps these questions might help? Which areas of the role might you struggle with? (be as specific as you can)* What reasonable adjustments do you need? If you've had reasonable adjustments previously in another role or environment, how did they...