My MS Bully and Me

                                                         Copyright: C King It's been over a year since my last post and, if you're missing this blog, you're probably wondering where I have been. To say that I have been been resting on my laurels would be an overstatement, given that I'm not very good at pacing. After months of home-schooling finally ended, I threw myself into supporting others, including advocating for them.  I have been particularly busy in my advocacy work - guest blogging, filming, reporting, mentoring, public speaking. This year, I've also been a member of the All Party Parliamentary Group (APPG) for MS, which has been extremely interesting, and supporting others in navigating a health system which, whilst amazing, can be sometimes monolithic and uncommunicative at a time when some are going through the most difficult ...

Copyright: C King You may remember that at the start of lockdown, I wrote an article for the MS Trust and talked to them  regarding how MSers are good at dealing with change, reminding us that for some, we are dab hands at self-isolation, having already dealt with aspects of lockdown, including inaccessibility, not seeing family and friends, unable to access public toilets, having our lives turned upside down suddenly with relapses, and so on. When relating our MS experiences to lockdow n, I was very careful to talk about this in the context of change, something that, due to the unpredictable nature of MS, we are used to.  My language was deliberate: I didn't say that we would come out unscathed. It was a 'welcome to my world', balanced with a 'change is hard, but we'll get through it.' And we are. O ur resourceful mindset and our varied skillset have been hugely beneficial at this very strange time, but  we have now had to balance the extra challenges o...

Copyright: C King What can we learn from the Virus situation? Apart from the obvious, I really think there are lessons for humanity here and, given that we are likely to suffer some kind of global crisis again, I think these are worth noting. Good Things to Come from the Situation 1. People are reaching out, reconnecting and supporting each other. I genuinely have been moved by the kindness of neighbours. Within a week of the first government press conference on the Virus, several threads appeared on a local neighbourhood app offering to help those locked away, with shopping drop offs, telephone chats, even the latest tips on where to buy that elusive toilet roll (I kid you not!). 2 . Yes, o rganisations seem to have forgotten their disaster recovery plans, made after relatively recent terrorist attacks, only to be seized and enacted by new handlers. Yet b usinesses are finding creative ways to keep people working and connected, whilst still promoting remote working. Agile ...

Copyright: C King Continuing from Part 1 , I thought I would share this year's goals so that you can see how I have taken the steer given and applied it. However, I'm not going to spell these out in detail, as I'm sure you can read between the lines. 2019 was a transformative year, both in the way I experienced and approached aspects of life that could not be ignored. Time (sometimes brutally) highlighted what was missing, but I mostly realised that my 'voice' was not as much heard or as distinct, as I had hoped. So I would be lying if I said these goals weren't already set.  Goal 1: Return to work  In 2019, I took a career break. Usually, people tend to plan a sabbatical during their careers to do something a bit different, take time out to discover what they want to do next, try things out. Mine was completely unplanned, but I took it to focus on my health and as a way to keep a job I love (creative problem-solver, anyone?). Obviously, I have a st...

  Copyright: C King How can having an invisible symptom be useful, I hear you ask. I'm going to start this off by being very clear that I'm not suggesting that being invisible in itself is useful or that those of us with chronic illness are deliberately hiding our symptoms. Nor am I encouraging people not to share their condition with anyone.  On this World MS Day, social media will undoubtedly be flooded by posts about invisible symptoms. Rightly so, as it's important for non-MSers to understand these symptoms, and perhaps for others in chronic illness communities to see the relative similarities and differences in our conditions.  I'd like to do something different, however. I would like to look at when having symptoms that are invisible, may be advantageous. When we're not ready Sometimes, we just aren't ready to show our hand. This is true of lots of situations. As a member of various online forums, I see people who have just started dating someone...

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...

If you're wondering where I've been these last few weeks, I've been watching my energies and being very careful about what I've been devoting these to. Ive been working with Shift.MS and their brilliant MS & Work series. I hope this helps someone out there or at least kicks off some thought-provoking discussion. The Pros & Cons of Disclosure https://youtu.be/8HxIFCk2W20 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

I've worked with MS since 2008 and when I was diagnosed, I had already been working with an organisation for a year and a half. In this circumstance, in the haze of diagnosis, I felt obliged to call my line manager directly after telling my parents. I didn't have to, I probably shouldn't have. It would have made sense to let the news sink in, but I needed time off and I didn't just want to call in sick. This is tip no 1. Don't feel obliged to tell anyone until you're absolutely ready. This may be hours, weeks, months or even years. Unless you're legally required to, you don't need to disclose. My role was made redundant six months later and I was pregnant six months after that. I decided to take some contract work, knowing that I wanted to take a year for my version of maternity leave. I was quite far into the selection process, for a role I could have performed beautifully whilst asleep, and at the last hurdle they asked me if I had any holidays boo...

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...