Disability, Health and politics, Invisible illness, Mama mifsud blog, Me, Media, mental health, Perception

Please, see ME….

I’m coming off the back of a bad one. It’s always strange when I have been stuck in the house so much. I almost get scared of the outside world, that something terrible is going to happen to me if I venture out into it. How will I speak to people? Will anyone even see me? Will they judge me?

I’ve been struggling a lot lately with my own sense of self. I’m not sure who I am anymore. I don’t want to just be ‘that ill woman’.

It’s so hard to keep a sense of who you are when there is so much that defines you. Health. Finance. Living conditions. People already think they know who I am before I have spoken. All I want is to be seen as me by the general public, not all these things that society defines me as.

I feel like it’s a fight I will never win.

I know it’s sounds pretty juvenile caring what other people think of me so much. I am a grown woman after all. I guess it’s more that I want people to judge me for who i am as person, not the roles cast upon me, mother, dependent wife, patient.

Of course I’m not talking about my friends or family, they treat me just the same. But I know they worry. My husband lately has been increasingly anxious, as my brain has been doing funky things again. I see the look of fear in his eyes and it breaks my heart. I just want to be normal and not the source of worry and anxiety for him.

The guilt is overwhelming.

I don’t even really know where I’m going with this…. It’s so hard to explain that the battles you face as someone so Ill are so much more complicated than life or death. Pain or no pain. It fundamentally changes who you are and how others perceive you. The battle to be as healthy as possible is one thing, but the constant struggle to keep on top of your mental health is relentless.

I don’t even know why, but I’m crying again. I’m just so angry and fed up that this is it for me. This is my lot. I can never work. I can never just go off on an adventure and see where I end up. I can never even leave the fucking house without it being planned with military precision. There is no random, no unknown…

There is no unexpected.

It’s the way it has to be to keep me safe and as well as possible. Most days I see the bigger picture that it has to be this way to keep me living. Just today, I’m angry. I fight so hard to be seen as me… It’s part of the reason I write this blog, but at the same time it’s extremely hard not to focus on illness as its intrinsically part of me.

Would I be the same person without it?

I have got to give up camping. For most people this would be a relief but it’s the one more adventurous  thing I’ve done. It feels like that final part I had left that could be more exciting and unpredicatble has been taken away, and I’m left with predictable and safe forever, and I hate that.

I know I must sound so ungrateful. I have so much and I am so lucky.

I never focus on the losses usually…. Chronic illness is as much of a mental health issue as it is physical. I’m so strong most of the time, I try to protect the people I love and that love me from seeing how utterly broken I feel inside. But it’s always there for me, and I guess today it’s just rearing its head more than usual.

I’m so relieved I don’t have to fight with the dwp any more, but I think stupidly I thought winning that battle would somehow make me feel happy. I do feel relieved, but the thing is, my bigger battles remain. To live. To deal with scared angry people saying horrid stuff about people like me online, and in the papers. To overhear snippets of conversations where the ‘mes’ are devalued, dismissed and looked down upon.

It’s never going to stop.

It’s a fight I am never going to win, I see that now.

3 thoughts on “Please, see ME….”

  1. You are a human being in your own right. Take heart. Acceptance will be part of giving you the peace that is needed to continue without stress. You will never walk alone,xxxxx

    Liked by 1 person

  2. There are so many things that define you for me… Epic organisation, rules (they control the fun), hilarious phrases you’ve created, admirable self-confidence and self-reliance, foghorn voice, the kindest heart, a love of learning, console loving geekiness and jewellery-wearing femininity in equal measures… I could go on but that self-confidence might become too much to handle… 😉 We all love YOU.

    Liked by 1 person

    1. Thanks so much much for such profoundly lovely words, my gorgeous friend…

      when I wrote this I was having one of my dark days…. They come infrequently and the rest of the 95% of the time I feel positive and strong.

      I wrote this because I felt it was important for people to see how it feels on those dark days, with the aim that understanding, empathy and compassion would increases towards sufferers.

      It is also to reach out to our chronically ill community, highlighting that it’s normal to feel angry and sad sometimes, you don’t always have to say ‘I’m fine’ when you aren’t.

      I hope that this message will bring people hope, it will be ok as long as you ask for accept any support you need.

      And it’s fine to say out loud ‘this is hard, I can’t take it anymore’

      That way you get the help you need to scoop you up back on the path to hope and positivity.

      Love mama mifsud xxx


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