The summer of 2014 came and went. Much fun was had catching up with friends and enjoying the sunshine. I don’t think I’ve spent a whole summer outside in the sun since I was a kid! I had a sun tan for the first time in years.
Now, I decided quite early on in my diagnosis that I would not keep it a secret. Throughout my life, I have watched people try and hide stuff or fail to communicate properly and I can safely say that no good ever came of it. A problem shared and all that.
So, throughout the summer, I made a conscious effort to let everyone know about my diagnosis. If, like me, this is the path you choose (and it’s not for everyone, I understand that), then expect the unexpected. It is impossible to prepare for the myriad reactions people will have – just go with the flow!
Some looked at me in disbelief, some burst into tears, others took it on board and then carried on a normal conversation. What I wasn’t expecting was how some of those reactions made me feel. I will explain and illustrate:
“MS? Oh, John up the road has got that – he’s fine, just carries on as normal, you’d never know to look at him!”
Those words felt like this..
It was a punch in the face and it made me really angry. How DARE you belittle my disease!! And how DARE you presume to know what John Up The Road is going through!! When you see John Up The Road out and about, it’s because he’s having a good day. NEWSFLASH! When he’s having a bad day, he probably can’t even leave the house. As a result, you conveniently don’t see that side of his life. Bet you didn’t think about that, did you?! Arghhhhh!!
Of course, I said all of this to myself while biting my tongue very hard. I hadn’t expected to have those feelings but it really hurt. It also made me feel like a fraud. At the same time, I felt sorry for the person who made that comment. There was no malice in it, in fact it was said with good heart and was an attempt to make me feel reassured somehow. Unfortunately, it had the opposite effect. I felt like I had to prove my MS, prove my pain. I didn’t want sympathy, I’ve never wanted that, just understanding. If this was the sort of attitude I was going to come up against, I wondered if it might be easier to just injure myself. At least my problem would be visible.
The next one was better:
“Gosh, how do you catch MS then? Is it viral?”
Those words made me want to do this:
I mean REALLY?! Maybe I should just tie a bell round my neck and walk the streets shouting “Unclean! Unclean!” I was speechless. I stepped out of their space in case they were worried I might sneeze on them. Again, there was no malice in the comment but it was becoming very clear to me that few people had any understanding of this disease. To be fair, I knew nothing about it before I had it. Education of others was going to be key to living with MS. It’s part of the reason for this blog.
Suffice to say, my decision to tell people about my MS wasn’t going to be an easy one to live with. Over that summer, I had been made to feel like a fraudulent leper with anger management issues. But, I also felt loved, supported and safe with those that knew me best. This would never have happened if I’d kept my mouth shut. I had a network of amazing friends, family and neighbours to help me out on the bad days, run me back and forth to hospital when I needed it and listen to me ramble on when I needed to vent. I discovered that there are, in fact, quite a lot of other young women nearby who are going through the exact same thing. I was not alone. And to me, that’s worth a hundred ill thought out comments. To feel alone would be so much worse.
At this point I’d like to say that I defaulted to my factory setting and went back to work but that wasn’t to be. My sabbatical came to an end and the only route back to work on offer was straight back into my full-time management role. Damn it. I couldn’t do it. My body would never allow it and I knew full well that if I went back to work at my ‘pre-MS’ pace, I’d be in hospital within a week. I chose to resign. I didn’t want to burden anyone with this. Besides, in my head I would be over this in a few months and then maybe I could try something different, start a new business perhaps, find another job? Oh my goodness, how naïve was I..!!
Multiple What?! 
Another brilliant chapter Jo – people are just so ignorant, trouble is, they don’t realise they are being so insensitive! Barbara xxx
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So very true Jo! I was diagnosed in October 2014, and like you decided to be very open about it. Like Barbara says, many people are so ignorant and/or insensitive. My sister also has MS and one person actually said to me, ‘Your sister’s fine so you’ll be alright too.’…! I just wanted to scream, ‘Firstly, she’s NOT ‘fine’, and secondly, I am NOT my sister!’ Of course I didn’t, I just smiled and then went home and cried!! We all have to just smile as much as we can 😊 Laura xx
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Sometimes I tell my husband that I’m exhausted and he replies that he is quite tired as well, that it’s normal, we’ve done so much today… and my heart sinks. For a moment I feel so frustrated that after all this time he’s trying to normalize something that it isn’t normal and it makes me feel so alone. But he’s not being insensitive, I think he’s just terrified that my ME might get worse and he’s telling himself as well as me that everything will be fine. I think that in some measure the same thing happens to others when you tell them about your illness. After all it took me many months to accept it myself. Perhaps it’s too much to expect others to accept and fully understand it in a 10 minutes conversation. These days when I tell people I’ve got ME, it’s not that I try to minimise it, but I mention it quickly and change the conversation to something else. Most times they don’t say anything and continue the conversation clearly in a bit of a shock. This suits me, explaining it takes too much of my energy and I hate repeating the same again and again to different people. If they want to know more, they can Google it.
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Very much enjoying your blog, thanks for relating the experience, though it must be difficult at times to relive it.
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Well written. Can’t wait to read the paragraph about having to explain to people that in fact you’re not pissed and then witnessing their reproachful yeah right look!
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You have seen my comments over past few days can be rash and a little unthought out, so all I shall say for now is thankyou for allowing me into your world for a glimpse behind the green paint. I feel privileged you have done so
x
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