So, when I write and publish a post on here, I don’t actually think who is going to read it. I genuinely am surprised when someone tells me they have! I’ve been a bit quiet the past few days, and this has mainly just been due to life taking over a bit, in a good way. And a small part of it, has been down to me having one of those mild mini breakdowns I had the first week I launched.
You see, I know I have said this before, but I am genuinely humbled and gobsmacked when people contact me and tell me they are enjoying the blog. Jesus, I’ve had messages from ex-boyfriends, people I met once 10 years ago, strangers from all over the world, hell I have even had a few messages off guys I’ve dated asking me if it was them I was hiding from in the Asda behind the guinea pig food…”erm no don’t be daft, of course it wasn’t you”….eeeeeek! A guy even came up to me the other day and asked me “are you that girl out the echo with the blog?”…then he told me how his cousin has MS and she is loving it… I was a little bit made up but a little LOT embarrassed.
So whether I like it or not, everyone around me probably knows I have MS now. My mini meltdown was due the fact that I cannot rewind here and take it all back. I can’t stop certain people I don’t want to read it, reading it. You see, not everyone’s reactions when they find out you have it, is as positive as you may think. I’ve experienced the different ends of the spectrum. And the negative end with the incorrect assumptions about what MS is, mean a lot of people who are diagnosed choose to keep it a secret, from everyone. I feel so sad for these people that they don’t feel that they have the people around them who understand and can support them. I have had over 25 emails – yes 25 – from people telling me they keep their MS a secret because they are scared of what people will think. It just makes me angry and really sad.
As I have said before I was very ignorant of what MS was prior to my Dx (diagnosis), so I started this journey blind (excuse the pun). Other people have told me, that they have lost friends because they have got annoyed with them if they have to cancel plans last minute (MS doesn’t have a schedule of when it attacks), or have got fed up of them “being sick” or being “lazy”.. (fatigue is not the same as tiredness and it is not laziness), I am not sure if this is because they just don’t understand or they are just crap friends…I have been lucky that I have a great bunch of friends, who are all now mini experts on MS…god love em!
Also a lot of people have told me their partners have jumped ship because they couldn’t handle it, now that is frightening stuff. But my perception is that if any people choose to walk out of your life because you’ve been diagnosed with an illness, which you haven’t asked for can we just point out, then good riddance, wave them off, bake some vol-au-vents and throw them a bloody leaving party and then, move on. Easier said than done here I know, but the people who love you won’t walk away, that’s from my own experiences anyway. The weak, cowardly ones, will, and who needs people like that in your life anyway
As I have said before my MS doesn’t define me, so if you’re my mate, I’ll talk to you about clothes, shoes, boys, recent dates, the weather, the dog, my next door neighbour, the postman and the fact I don’t understand how people put chocolate in the fridge or the milk in first in a cuppa…then and only then may I briefly mention it. I just get on with it. But I know all the people in my life wouldn’t walk away if I did need to talk about it, or have a moan…that I am very thankful for.
I don’t think I have ever been embarrassed of having MS, but I have felt that fear and nervousness when telling people I have it for the first time, because you just never know how someone is going to react. I once told someone and they looked at me in disgust, and almost dismissed it, told me to just give up meat and eat like a vegan and “that would sort me out”. Really, you think that’s going to cure it? I’ll start filling out your application for the Nobel Prize myself. Idiot. I wanted to scream, and tell this person that even if I ate 327 pieces of broccoli a day with a side of 217 bowls of Kale, I’d still have MS. Instead, I held my breath, accepted that some people are just ignorant and don’t want to understand and walked away trying to find the nearest shop to buy a pack of ham.
So, back to the mini meltdown, I’ve thought long and hard about why I started feeling all panicky and I’ve figured out why. It’s being scared of the misconceptions and people treating me “like a sick” person. It’s the realisation that I made a promise to be honest on here, and now I know people are actually reading it…ARGHHHHH. It’s the fact that people could find out I have MS before I am ready to tell them. It’s the fact that people may just see a big massive flashing light saying “disabled” when they hear my name. The list goes on…BUT what I keep reminding myself that is bigger than all this, is that by people talking about it and understanding MS, it ultimately makes it easier for the people living with MS…so once again I’m telling myself to get “over it”, that I need to forget about my fears and focus on fostering as much dialogue about MS as I can through my journey with it!
Also, you never know, by reading all my rambling thoughts you just might stop yourself from ever becoming that friend who gets annoyed if your mate with MS cancels all the time…it may make you think twice …fingers crossed anyway.
Thanks for reading, hope you all had a beautiful weekend! I made the most of the VIT D boost without taking all my clothes off you’ll be glad to hear.