The secrets that surround an illness are never-ending, but this has to change and this is me doing my part to help with that change. I’ve known and heard of stories of people keeping an illness from friends, family, from colleagues, as well as parents; and every time I hear a new story, it breaks my heart a little more. Because I feel the pain they feel. I’ve been there and that place is dark and lonely and scary. That place, is also a place, I believe can make one sicker than he or she already is and I say this, because it happened to me. We need to find a way to get past the fear, past the “stuckness” we find ourselves in, that’s ultimately keeping us from growth, keeping us from moving forward and connecting with those that love us, because connection, is everything.
There are two questions that need to be answered. The how and the why. The reason I want to discuss “how?”, is because I think it gives non sufferers, just a little insight about invisible disabilities. So, how, did I keep my disability a secret for 13 years? Well, because most of the time, I look fine; actually, I look well! But many days, I wasn’t. So, what I’m trying to bring across here is that a chronic debilitating disease, can most days, be easier to hide than a common cold. Now take a moment, to digest that and take a moment to understand what it might mean about people around you. All I needed to do was, get up, get dressed, wear some make up, wear the mask you call a smile and just like that, I’m hiding it, all of it. Sounds easy as pie, but agonising to my body and soul in ways I could never even begin to explain.
The pending question still remains, “Why?” Why the secrecy. Why is it so hard to say out loud? Firstly, I think the reasons behind the secrets, are different depending on whom you are keeping the secret from. In my case, I kept it from pretty much most people for most years, besides my immediate family and closest friends, so ill speak about that. The two things that I’m going to share with you today includes facts that most people find hard to even admit in the safety of a therapy room, but here I am, speaking to all of you about it; about my shame and my fears.
The fear of not knowing how people are going to react and the shame that comes along with being sick. Yet that sounds crazy doesn’t it, because there is nothing shameful about it. So, I wonder, what made me feel this way for so long… Society? Most likely. Pride? Maybe. My therapist recently told me “there is no shame in pain.” Now, I agree. There isn’t. But for a long time, it felt like there was. Fact is, that I didn’t at any point, want people to treat me any differently, I didn’t want people to see me as the lesser person in the room just because I was sick. I never wanted people to pity me or see me as a burden, I never wanted to be the person that didn’t belong or the person that wasn’t worthy of love because I was sick.
I believed for very long, that I needed to fake it in order to make it. The reality is, society puts expectations on us, which I felt I didn’t live up to. I pitied myself. I’m the one that didn’t love myself enough, just because in my eyes I wasn’t “perfect” the way I was meant to be. But through therapy I have learnt that not being perfect in reality just means… you are human! Not being perfect, I now know, is what makes you, beautiful.
So, I’ll admit, I believe a major part of why I always kept this a secret, is because I’m the one that felt like MS made me the lesser person in the room for a really long time. But to be quite frank, I now realise, if anything, MS makes me the stronger one in the room not the other way around. I’m so glad I finally realised that and I really want you to realise this too. Suffering, makes us more worthy not less. Suffering makes us the stronger ones. So, say it!
There is, no shame, in pain. We need to stop worrying about the different reasons we might be keeping our illness a secret, whichever the reason may be and be honest. Stop worrying… about making other people feel uncomfortable, stop worrying… about worrying other people, or worrying… about what other people might think or worrying about fitting in. Instead, just say the words; I am unwell. This is the situation and, on some days, I might need help. Because after you say it, what’s the worst thing that can happen anyway?
It’s hard, I know. I see you. I myself have kept this secret from family members for years and it killed me every time I lied about it. So, I know it isn’t easy. But let’s discuss it, me and you, all of you keeping this big secret. Message me, email me, because you shouldn’t be alone in this. You cannot be, not forever, not if you want to stay mentally well. Therapy saved my life, and I’m not embarrassed to say that. In fact, I cannot repeat it enough especially, during the end of mental health week and I will have a blog post all about that when the time is right. Through therapy came my awareness, my acknowledgment, and finally my acceptance, as well as an understanding of the truth, and the truth is this. Life is hard enough, let’s not make it harder on ourselves by suffering alone.
I decide to end on a lighter and more random note because this blog, turned out to be heavier than I’d hoped. So, I’ll tell you about something that I really wished I could do back when I had a fulltime job. I wonder, wouldn’t life be easier if talking about our illnesses became so “normal”, so accepted, that your email out-of-office reply could say; “Hey I’m not available right now. Busy kicking cancer’s ass, will catch up with you once I’m done!” Or “Hey I’m currently suffering an MS relapse so I need some time to regain my eyesight. I’ll be sure to reply once I can see your email. Pun intended!” 🙂 Wouldn’t it be amazing? I think so. I really do. But if I’m asking too much from society, then let’s start by telling a friend you haven’t told, or your mum, or a therapist, or me.
Reading the first part of this blog, i was already thinking of what comment i wanted to post. You saved me the trouble by saying it later on. “MS makes me the stronger one in the room not the other way around.”
Ps. The Out-Of-Office thing is brilliant. Wish i thought about it before!
Hi Dan, thanks for reading and thanks for your comment That’s my favourite part ! 🙃 Something to keep in mind isn’t it !
Very powerful, realistic and straight to the point as always.
Your words are wise for anyone reading the blog no matter the condition one is in. 🧡 very wise words indeed.
You’re amazing snd one strong lady ❤️
Than you Lara ☺️ xx
Ilona I love reading your blog. There’s no shame in pain!
And the out of office message is great and funny at the same time. Keep it up
I thought the blog needed some comic relief; however I genuinely mean it ☺️ thanks for reading Rose ♥️
You just keep amazing me every day with your bravery, strength and your beautiful words. ❤
Thank you Catherine 🙂 and Thank you for reading!
So so so on point, and especially because it doesn’t just resonate with people with MS but also with other conditions that are invisible. I loved the why part and describing the fear was just so accurate! It’s nice to read that it’s a shared process by more than the people in our category.
I’m so glad you could resonate despite not having MS. That’s exactly what I wished when I had the idea to launch this blog. I also think its important for us to see other’s processes as well as shared fears! xxx
You hit all of the points that us who suffer go thru. I kept it inside for years and as you said I felt it was killing me. Started therapy a few weeks ago……hopefully it helps me as it is helping you. Thanks for the blog!
Hi Allan, I hope that it will help you yes 🙂 Remember, the two most important things to keep in mind are that there is no shame in pain and we do not need to suffer alone. I’m glad you’re following my blog. Thank you for reading !