You Can’t Tell Me.

Looking at social media accounts, you can’t always tell how someone is truly feeling. Social media accounts are full of fake smiles and fake happiness. I’m an example of that. Don’t get me wrong – I’m not completely miserable. I can still find things in my days to be happy about but depression and anxiety don’t give you a choice. Ever. Anyone who has had a brain tumour, malignant or non-malignant, knows exactly what I’m about to talk about.

I’ve been struggling heavily all these months post-op. No one really knows because I celebrate my external victories proudly, but I only do that because that is literally all people see from my disease. Is what it did to me physically on the outside of my body. They have no idea what it did to my mind or the rest of my body.

Higher levels of cortisol over a long period of time, permanently affect mood, concentration, memory and learning capabilities. And that’s “higher levels” in a normal person who is just stressed. But someone who had Cushing’s Disease, that “higher level” is beyond “high”. It’s a deadly level of cortisol. So if high levels of cortisol does that to a normal person, imagine what it does to someone with a disease like mine? Of course we’re going to be completely different. We will NEVER recover from that – ever. We must merely find new ways of coping with these changes. Which is not as easy as it seems.

No one knows, but I had a major break down 2 weeks into my new job. Something I knew I was capable of doing wonderfully, I couldn’t do. And I couldn’t grasp it. As I sat in my car bawling a la Kim Kardashian style, I had 5 people tell me I was “just” overwhelmed and that I “can do it”. The positivity is kind, I don’t deny that and I’m not ignoring it. But when I’m telling you, that I am a different person, I can’t think, I can’t remember, and I can’t function, please trust me. Who had the disease and tumour? You? Me? Me. I had it. I dealt with the issues, I was in my body before, during and now after. Me.

Me. Me. Me. Me.

As many of you know, I am a part of the Brain Tumour Foundation community where I get to interact with a lot of different brain tumour sufferers/survivors and this has been a topic that has been brought up about 2-3 times this week alone. Where we feel like we are having a very difficult time coping with our new selves, finding out how our minds work and how difficult we are finding it to go back to our normal jobs. Most of us can’t. We can no longer go to work where we used to or doing the work we used to do.

Just take the time now for a minute to really think about that. Put yourself in that situation – where one minute you’re fine, the next you’re so sick and after surgery, months and months, sometimes years after, and you still can’t function mentally. Nothing you do will allow you to think as clear, critically and quickly as you once did. Socializing is difficult, remembering names, locations, stories, memories, knowledge. Nothing stays long or thoughts take a long time to form or it takes hours, days or even months to remember something you should’ve said in a conversation.

Post-surgery for many of us brain tumour survivors entails therapy, not going back to work and anti-depressants. All options I hate and don’t want but I’ve succumbed to. And it’s nothing to be ashamed of. Not at all. But it really hurts when all you want is to get back to a normal quality of life and it’s never going to happen. It’s like learning about a new person all over again. Having to find your new level of thinking, what you can do for a living, what can help benefit the new you to have as best of a life as possible.

So next time anyone with any disease tells you how they feel, don’t dismiss their feelings. Your positivity is appreciated but it’s also dismissing how they know they feel and know how they changed. Instead of trying to shush them with positivity that won’t work for them, most times, reality is what is needed in times like this. Support them positively by saying you can help them so they feel more comfortable. We know the realities of our recoveries and how our minds and bodies will function going forward. We just ask you be positive by supporting us and our choices to do what is best for as comfortable of a life as we can possibly have 🙂

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