Am I a fraud?

I can’t be the only MS-er that feels like this…can I?

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You see, I kind of feel like I don’t fit into any box, not that I agree with people being put in categories, but I’m not sure how else to articulate it. Let me explain…

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I have multiple sclerosis. The MRI shows the evidence, the Consultants agree, I am on a highly effective DMT (Ocrevus). I didn’t imagine the relapses that I have had; they were real and, at the time, really affected my quality of life. I still feel some of the effects of those relapses in my body. I have some permanent blind spots from the Optic Neuritis, and I have to pass a visual fields test and renew my driving licence every three years. I have nerve damage down one side of my body that, as I get older, reminds me that one side of me doesn’t work quite as well as it used to. I sometimes get crippling fatigue that takes me, without warning, and means I have to go immediately to bed, no time wasting, do not pass go, just lie and sleep – NOW! The brain fog that comes with the perimenopause that some of my friends are now experiencing has been the bane of my life for the last 6 years. I’m pretty certain that one of the brain connections that deals with mathematics has been permanently severed, so please don’t ask me to do mental arithmetic or calculate a percentage anymore – most of the A-Level maths has sadly been erased. 

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So, that is one box. I am an MSer. I’m not ashamed of it and although I don’t announce it to people and I don’t feel it defines me, I know it is part of my being and it is never going to leave. I do sometimes feel compelled to tell people or drop it into conversation so that people know but I’m not really sure why I do that. Maybe that will make me feel less of a fraud?

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The flipside, and what I feel I need to explain, is that saying I’m an MSer feels like I’m a fraud and a cheat. Is that a type of imposter syndrome?

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I can, some days (most days if I’m honest), walk 20k steps without giving it a second thought; I can balance in my yoga class with more stability than many of the other attendees; I juggle work (albeit part-time) with being a housewife, a Mum of 2 children who have a full calendar of extracurricular activities and rely on me to taxi them here, there and everywhere; I volunteer in two, shortly to be three different capacities; I arrange things with my friends; I can cope when my husband works abroad for days at a time, and usually still manage to keep all the aforementioned plates spinning. So, to all intents and purposes, I am doing well, really well, and I can’t complain.  I don’t want to complain, and I really try not to complain, because I am so, so grateful that I can do all this stuff. I’m so enormously lucky that MS has not taken my sight, or my mobility, or my bowel and bladder function, like it has for so many MS sufferers. I do live with the knowledge though that it could, at any moment, take one of these things away from me and I think that is what gives me this strong sense of gratitude.

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I hope that goes some way to explaining and allows some understanding of my issue. Which side of the fence should I sit on? The side where I sometimes feel like Wonderwoman, or the one who feels no-one appreciates how I sometimes feel and who wants to scream at people “you really don’t know what tiredness is!!”. Am I the person who can handle whatever life throws at them, or the one who wants a bit of compassion for some of the challenges they are facing? I don’t feel like I can be both, but I don’t want to deny one in favour of the other. Do I need to?

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I also don’t want people to dislike me (who does?!). I worry that someone who doesn’t have MS, or a lived experience of chronic illness, might think I am playing the card, and that when I complain about anything at all, ‘it’ll be because she has MS’. Then I worry that my fellow MSers might dislike me because I’m not suffering enough to be wearing the MS badge; with that comes the guilt of imagining people could be cruel and wish a person was suffering more. Just to clarify, I don’t think all people are cruel in that way at all, I just know humans can think that way, and so my negative bias can sometimes default to imagining people are thinking the worst and maybe that says more about me than others! So, I can’t win, all thoughts seem to lead to an outcome where I feel like the baddie. In fact, writing this paragraph has made me question how this will be received, and the hope that it will be received in the way it is intended; that this is really me just letting my thoughts fall on to the paper, in the hope that it might help me process things and maybe help other people who might feel they are in the same position, and help them feel less alone.

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I feel like I have come a long way since the day a consultant, who hadn’t quite perfected how to break such massive news, said “so, you have Multiple Sclerosis”. Although it wasn’t totally unexpected, all MSers will know that statement and confirmation is a large and bitter pill to swallow, and to be honest I don’t remember much from that meeting apart from that one sentence. I’ve grown for the better since that day, learnt lots about myself, made new friends, been shown what is actually important in life, all thanks to that diagnosis. Which leads me to another quandary: would I swap it? Of course, I would rather not have a chronic illness that, when it attacks, shows no mercy and gives no warning, but do I believe I am a better, kinder, more compassionate person because of it? Yes, I do.

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Like any experience or situation in life, you can overthink it. It is better to live in the moment, although I suppose only if that moment is good. And at the moment, it is good. I can’t complain, so maybe it is time for me to just stop worrying about people thinking I’m a fraud, because they probably don’t, it’s just in my head. When the fraud imposter thoughts pop into my head maybe I should think back to the reason they arose, because I’m feeling good and there is nothing bad about that.

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