Chronically misunderstood- My personal experience with shame.

Content warning! Severe Mental Health chat.

I wanted to write this post – no scrap that actually, I NEEDED to write it. Not for sympathy.
Not for ‘attention’ well for attention to the topic maybe, but for my truth.
The need to share my truth of this awful rollercoaster I’m on with my health.

To the outside world my life has never looked less complicated. I’m married to the best man I’ve ever known. I have two beautiful kids. I’m writing and advocating – two of the things that set my soul on fire.

So what have I got to be so hysterical about? This week is the 4th week I’ve not been able to stay up for longer than 3 hours a day. My body is not working as it should. My mum, husband and two of my best friends have all looked after my kids during half term: a week when I should be making memories with them. 3 weeks ago I caught a common cold that left me in bed for 5 days at my mum’s house.
Off the back off that came a Fibro flare, my joints seized and neuropathy took over my extremities. This week I had some blood tests which show my inflammatory markers are high again.

The pain I’ve been trying to hide has left me angry and ashamed. I’m angry because I’m tired of having to explain that I’m sick, even though I don’t ‘look’ it. The physical and mental toll of being unwell is too much.

  • I’m angry at the world for not understanding my needs.
  • I’m angry that the sound of two people talking at once now cause visceral reactions in me, that make me want to run into oncoming traffic.
  • I’m angry because I’m ashamed that once a month during PMDD I am hysterical and I’m ashamed that I can’t look after my own children without help.
  • I’m ashamed at the way I respond to stress and stimuli.
  • I’m ashamed at myself for not being more grateful on the hard days.
  • I’m ashamed that I can’t cope with life in an admirable and inspiring way; because society deems that’s the way disabled people should cope.
  • That I’m not thriving despite anything – I’m surviving at best.

“I’m scared to be around them, in case I fuck them up with my very existence”

Yesterday I walked the dog in the rain and thought about throwing myself in the river. I don’t want to do that, but it’s a thought that niggles for 10-15 days a month, sometimes grows arms & legs & tells me my life, my wonderful life, with my beautiful family isn’t worth sticking around for.

I could and would never intentionally leave my kids, but this knowledge terrifies me too, because sometimes I’m overwhelmed by it. I’m scared to be around them, in case I unintentionally fuck them up with my very existence.

That word again: SHAME in my opinion parents are shamed for their struggles. Especially mothers.

She’s not doing enough her kids are acting out.

She’s doing too much her kids are neglected.

She needs help – those poor kids.

And on it goes, the shame cycle.

For example: usually, after a post like this I get an influx of messages from kind strangers, telling me they’re sending love, and solitary one or two messages from people I know in person. My real life friends. It’s a tough one because whilst we absolutely should not rely on external validation as a coping mechanism, it can still be difficult to tell your brain that. With social media now being our go to resource for almost everything, you think your friends and family have seen it, you think they’re rolling their eyes. And because of those insecurities, it’s hard to dismiss the notion that these feelings, intrusive thoughts and so on, are feelings we indeed should be ashamed of.

I wish she’d keep it to herself because it makes me uncomfortable!

I dunno why she writes all that stuff there’s no need it’s so cringe.

She doesn’t know how lucky she is.

If she were really feeling that bad she wouldn’t be posting about it.

And it got me thinking, is this what we want our children growing up to believe? That when they feel bad about their life they must keep quiet? That if it’s so bad they’re even possibly thinking of ending it, nobody wants to hear about it. They should only tell a doctor or someone close to them because other people, the rest of the world, might feel uncomfortable if the whole truth is shared with them? Should we be teaching our kids that their feelings don’t matter because they’re cringe to read about, silly to other people who might not understand them? Attention seeking.

It’s not about attention, but even if it is – so what? Don’t people who might be feeling suicidal, or so unwell they’re struggling to keep themselves safe, deserve attention?

Aren’t we all – just trying our best to survive, with some of us finding it easier or harder than others at different times. It’s not about comparison, who has it worse, or wanting a pat on the back for speaking out…. It’s about acceptance on a grand scale. It’s about making small changes that will lead to larger societal shifts in how we relate to each other.

For me personally, the problem isn’t with recognising feelings of shame. I’m aware of them I’m aware of behaviours that stem from them. No, for me it’s about self compassion, that’s the one thing I can’t seem to grasp and it’s a major road block in helping me execute strategies to deal with shame and all of its associated emotions.

I made some decisions this week that I hope will help me tackle this moving forward.

Mum Guilt

I think I’ve definitely titled a previous blog mum guilt but I’m doing another one because these last weeks I’ve felt it. In the 4 and a half years I’ve been a parent I’d say it’s only the last year that I’ve managed to keep a tighter lid on the guilt. This is because most of the time, I know I’m doing my best and that has to be enough, doesn’t it?However every so often imposter syndrome will strike and I’ll have a wobble and feel like a shit mum. That happened last week. You may have read somewhere on my socials that I’ve been ill again (rolls eyes.) It’s been bad, I had a UTI that had me feverish for 8 days and kicked off a PEM flare like never before. On top of my day to day fibro symptoms and hormone fluctuations I have been sleeping the days away and Ciara my daughter, made a few comments about when I would be better. She said she was fed up because I’d been unwell since Halloween! She also said she had been wishing in her dreams for me to get better. It hurt my heart, because I try really hard to make an effort to be present in her life even when I’m feeling unwell, we do movie afternoons in my bed and make dens on the bedroom floor so she can feel close to me even when I’m laid up. Then I try desperately to make up for the flare days on the good days and we cram in activities when we can.

I have had to rely on my husband and my mum to do many of the school runs and activities these past weeks, so I’ve been feeling pretty redundant and guilty in return. Of course not everybody is in a position to lean on family for support and I know how lucky I am to have that option. With recent lockdowns and tier restrictions we’ve had those taken away from us somewhat and there are less people to lean on for support now, the bubble getting smaller. It feels as though I’m going backwards to the early days of parenthood where I felt like I was letting her down because I didn’t breast feed and I couldn’t establish a routine with a baby that screamed 15 hours a day. She woke up the other night after having a bad dream, thankfully a rare occurrence, but when I questioned her about it she said her dream was of me being cross. This really upset me because despite my constant state of being pissed off, it’s so rare for me to get cross with Ciara and that’s not a ploy to get you onside, it’s the truth. She is so rarely naughty she doesn’t have a lot of tellings off, but I have been more stressed than usual recently, and I’ve done some shouting at Shaun. I forget that she hears and understands everything now, she takes it all in. I don’t want her childhood memories to be of me in bed or me shouting at daddy but I feel powerless to prevent either somedays.

So whilst berating myself relentlessly about all the things I’m doing wrong I tried to tell myself that I also do a lot right. Shaun reminded me that Ciara remembers Halloween because I threw her a party and picnic with one of her friends. He reminded me how I never forget to be creative and go all out for school dress down days and elf of the shelf adventures. He reminded me that I never break promises and I don’t give her false hope and that whilst she is complaining about my being sick, it’s only because she wants more fun with mum.

I talked to a few of my friends that are mums recently to find out if they felt the same and they all said yes. They all said that this year has seen their patience wear thinner than ever, their ability to juggle the work/life/parenting quagmire has suffered and lines have been blurred. Self isolation and working from home with kids has seen to many mum meltdowns. One of my friends actually said to me: What would you say to me if I were you, Steph? Would you tell me I’m a shit mum for being unwell or losing my rag occasionally? And of course the answer is, no, I wouldn’t.

I feel like guilt is something we have to live with throughout our lives whether or not we’re parents, but as parents, every decision we make for our kids is based on assumption and guess work. There is never a right or wrong answer when parenting. There is consideration and gut instincts and pros and cons, but that’s pretty much it. I’ve said it before and I’ll say it again, there’s no handbook, there’s winging it, and there’s doing your best, do plenty of both, and you’re probably doing ok.

With Christmas comes a lot of pressure. In the world of parent bloggers there’s a whole heap of posts just waiting to press your mum guilt buttons, and there was a time when I would compare my parenting to perfect Instagram pictures on other mum accounts, but not anymore. I’ll keep it real and tell you, I still compare myself sometimes, how I look and what I’ve achieved, but I never compare my parenting, because I know that being a mum is as unique to me as my fingerprint. We all have morals, traditions and family values and they’re never the same as someone else’s. So if you too are feeling a bit overwhelmed with guilt, just remember you’re not alone and you’re not a shit mum! My mum once said to me that shit mum’s don’t worry about being shit, they just are, but good mums always worry about being good enough. How true is that!?

Your best is enough.