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 One of the most simultaneously exciting and frightening things in life is being a parent. Nothing makes your heart soar more than seeing your child achieve; nothing drives your heart to your mouth quicker than when they are fearless. For the most part, my parenting is like that of any other. Yet parents with chronic illness know that this creates an extra level of complexity. When do we tell our children about our condition? How do we handle questions? What do we do with the guilt of not always being able to do the things that other parents appear to do without limitations? I've spoken about chronic illness parenting guilt before. It's a unique emotion. This particular kind of guilt makes you doubt yourself. The biggest concern I have as a parent is am I doing it right? I always say it would be good if nature allowed us to give birth to our child, followed by a manual! My second concern as a parent is one specific to having a chronic illness: is my ...

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...

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...

I've previously discussed disclosing in a work context, and I think there's still quite a bit to delve into, however today I'd like to focus on disclosure to friends and family. In many ways, this is a much harder task than disclosing to an employer. Generally, in the latter context you only have to do this once, unless you decide to tell colleagues or change roles. Telling strangers about your MS is a much easier proposition. Telling people close to you can be frightening: in the short moment that you've told someone about your MS, they have formed an opinion, felt several emotions and the fight or flight response may have kicked in. I don't imagine there being any fisticuffs, I don't mean this. It is more that there might be an awkward silence or an uncomfortable air until you're able to reassure and inform them. Over the years, I've found that it's very difficult for family and friends to really see things to the extent that those that see me ...

Telling children about a health issue agonises most parents who have a chronic condition - when do I tell them? how do I do it? If you are diagnosed when your children are young, there are typically only three outcomes: you can tell them now, when they're older enough to understand the situation or let them find out on their own. As the latter is quite unusual, and presuming they discover the diagnosis at the same time, I'll concentrate on the first two options. Telling them when they're young Pros If you normalise MS, it doesn't feel like something terrible and children seem to accept it very quickly. You can head off any concerns they might have and if they really don't want to talk about it any more, the likelihood is they'll interrupt you and put on a new episode of Peppa pig or Pokémon. This might seem like a rejection, particularly if you've spent all week preparing for the discussion, but it's really important they are allowed time to refle...