The Cripple Chronicles

disability and the crippling feeling of failure | cripple chronicles podcast (Ep.46)

• Becca

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Hi friends 💜

Thanks so much for tuning in to another episode of the Cripple Chronicles podcast. a space where I talk openly about life with a disability, navigating mental health, and finding acceptance after trauma.

This episode is about that overwhelming feeling of failure. When you're doing everything you possibly can to cope, but it still feels like you're not doing enough. It’s something that shows up a lot when you’re disabled, especially when society holds you to impossible standards.

You’ll hear some reflective clips I recorded back when I was newly disabled and not coping well. I also talk about what it felt like to live with my fused leg before my amputation, and how internalised ableism and shame creep in even when you're trying your best.

Acceptance is messy. It doesn’t come in one neat moment of clarity. It comes in the everyday struggle to show up, to adapt, to stop equating your worth with productivity or physical ability.

So if you’ve ever felt like you’re failing at disability, or just life in general, you are not alone. This one’s for anyone processing big changes and learning to be gentle with themselves along the way.

📩 Email: cripplechroniclespod@gmail.com
📱 Follow me: @cripplechroniclespod on Instagram + TikTok

🎶 Music Credits:
Intro: Reflection by Filo Starquez
Outro: Angelz by ZiMPL

Have you ever felt like you're failing at life? Even when you know that you're  just doing your best? Like really, truly doing everything you can,  but there's still this voice in the back of your head whispering that it's not enough.  Hi friends, welcome back to the podcast. If you're new here, hi, my name's Becca. Keeping that in. My name is Becca. I like to talk about disability,  mental illness, anything that's going on in my life to be honest. And today I want to tell you about the moment that I thought choosing  amputation and losing my leg meant that I was giving up. That moment  taught me something really crucial about the difference between failing and being in a  body that just works differently. Because they're different things. I know it has been a while,  like four or five weeks now. I said I was aiming for fortnightly episodes,  the whole consistency thing. Life happened as it does, or more specifically, mobility happened. And again, honestly, it was a bit shit and it took me some  momentum to kind of try and get back on the horse,  so to speak. I do have episodes planned. I have been working on things in the background. So although I have been silent, there are things coming. It just sometimes takes a bit of  time for all of those things to come together and actually be on your screens or in your ear holes,  whatever. So if you do not want to miss an upload from me, subscribe, follow. And if you want to support me and the podcast, leave a little like. Follow  on social media at Crippled Chronicles Pod on Instagram and TikTok. I feel like I always say  this, but I'm in the process of figuring out the podcast and what I talk about. TikTok and talking about other things. And then Instagram,  where I'm sure sharing photos and using words because that's the way that I kind of deal  with things. But sometimes there is stuff where I'm like, I just want to sit down and record,  but it doesn't feel like... I feel like a lot of setup goes in usually to record in the podcast. I literally woke up this morning, made my breakfast and started recording. I've not  done anything else because there's two episodes that I've wanted to get  done probably for the last week. And life things just keep coming in and  I get home and I think I'll have the energy to do it and I don't. And I think yesterday I probably slept for about 18 hours because I'd just been go, go, go and  crashed a bit. But I'm here and I'm getting it done. There will be another episode whilst I work  on my deep dive in the background because planning episodes, recording them, editing them and getting  them up whilst also trying to do research for a longer episode and things like that. All of the ideas I have is very difficult sometimes, but I'm doing my best. I really  am. Before I got sidetracked there, I was doing my little follow, like, subscribe. The last thing I forgot to mention is anything you would like to get in contact with me about,  you can send me an email to cripplechroniclespod at gmail.com and I will get back to you,  whether that's you just sharing your story, what you like about the podcast,  if there's anything that you would change about the podcast, anything,  I would love to hear from you. Before I got distracted, before life happened and  everything was feeling out of control for a bit, it actually brings me about what I want to talk  about today. Today's episode is about something that has been weighing quite heavy on my mind. It's about disability and that lingering, gnawing feeling that somehow, even though  you are trying your best, you're failing. Even when you logically know that you're not. Even  when the evidence says that you're surviving and adapting and doing the absolute best with the  hand that you've been dealt, that whisper still creeps in that says that you're not doing enough. Maybe you've been there too and maybe you know exactly what I'm talking about. So  let's talk about it. Disability and failure, or more accurately, the feeling of failure. Even when that failure isn't actually real. Even when the idea of not being  enough is just a product of deeply ingrained societal messages. Even when our lives,  our timelines, our priorities simply don't match what the world says they should be. First off, I want to make it really clear that this is a  personal episode. It is not just research and stats, though yes,  you know me, I will throw a few in. But it is also how this shows up in my life. Because this feeling is not new for me. It has been here for years. I can  trace it back even before my amputation, before my prosthetic, before my accident. But in terms of that, the first time I remember really feeling like a failure,  it was when I was told that I might have to lose my leg. And I think you might have understood from  the introduction that this episode could be quite heavy. I am discussing terms of medical trauma,  not being looked after in the right capacity, mental health struggles,  urges of self-harming and suicidal ideation. So if that is something that you struggle with listening to,  then maybe it might be best to skip this episode. I don't know, see how you feel. I just wanted to  put that out there before I really get into the nitty gritty of this episode. I had an infection that just wouldn't shift. This metal frame bolted into my leg, holding  all of the pieces of my broken bones in place so that they could heal properly. The Elazerov frame. You will all be pretty aware of it now. However, when I first got it,  I couldn't find a lot of information on the frames. That's really why I sat down 40-odd  episodes ago and started talking about my accident and the journey that I was on. Because it's fucking terrifying to have basically this big fucking roll cage on your leg that is  tearing at your skin every time you move, getting infections, living in pain constantly. People need  to know that that's what it is, unfortunately. Having an Elazerov frame on is something that not  a massive amount of people will experience, but when you experience it, you get it. And I think that's the thing about a lot of disability. It can be really difficult  if you have people around you that have no idea of the things that you're experiencing.  And I think it makes that noise, the pressure of failure, even louder. With the frame. I mean, I had my frame on eight months before I got  my infection and my mental health was absolutely tanking. Every single day  felt like I was climbing a mountain and there was no summit in sight. And I remember thinking, I can't do this again. I said it out loud to everybody that would listen to  me. I physically, emotionally, mentally cannot go through potentially another eight months of this. And when I was told about the frame, they said it was  another two years. And I really didn't think that I could do it. Back then,  the idea of amputation didn't just feel like a medical decision. It felt like I was giving up, like I was waving a white flag. I did say out loud  that if at that point I lost my leg, I would kill myself. And now, sitting here, years on,  I know it sounds harsh, but that was the reality and that was how far gone I felt at that moment. But I didn't get my leg amputated at that point. I  got another lazaroff frame. I grew three new pieces of bone fusing my right knee. I had a bone graft. I kept fighting. But the just another three months kept going for a year. I'd built myself up only to get disappointed again. And it was  absolutely doing my head in. And at the beginning of 2022, I had a conversation  with my surgeon where I said that I was just really going crazy with this cycle. He told me that it was always my decision when it ended. I think I might get back  to that thought later on, because with the infection, thinking about two years in a frame,  saying that I couldn't do it, being about 75% certain that I was going to amputate my leg  because even in the hospital bed, I was sitting researching what is the better quality of life,  having a fused leg or having an amputation. And my surgeon scared me into getting the frame. He told me that if I amputated my leg at that point, I would be a full-time  wheelchair user by the time I was in my 30s. And that's not  true. I found that out when I went from a pre-amputation appointment. I have done a full episode on, but that information wasn't true. And  it was one of the things that made me go into that  frame on top of being told that it would only be a year. And it wasn't. And I felt tricked. I really felt tricked. But when it got to the start of 2022, I thought by  the end of this year, this is three years that my whole life has been on hold, that I've been  stuck in the house, not able to do anything, not being able to go out without anybody pushing me. It was just torture, to be honest. It felt like I was a prisoner in my  own body and the Alazerov frame was the fucking cage that I was stuck in.  So I decided if I still had the frame at the end of 2022, I'd amputate my leg on my terms. I reached out to limb services and I went to a pre-amputation appointment,  which I have just mentioned. I spoke about it in a previous episode. I am  pretty sure it is either episode 8 or episode 10. I can't remember it, but if you want to hear more about that, it will be on the screen  somewhere on YouTube and it will be linked below in the description. When I got home,  I remember saying, I really wish this wasn't my decision. I really wish that there would  be something that would take this out of my hands because this is fucking terrifying,  but it is my decision and I just need to go with it. A few weeks later, I had an appointment with my surgeon where he said, look,  we're going to try and take the frame off. It's been years. Either it's healed or it's not. So we started the process and it was decided that I would wait six weeks because people  were going out of the country, wanted to make sure that it was a steady process and  I would come in for three appointments and over the stage of these three appointments,  they would remove different parts of the frame from my leg with the final one being  that they would take the pins out and then I would be sent on my way home to start living  with a fused right leg and an ankle that didn't really have any movement in it after,  what do you call it when you get pregnant and they put it in your back, an epidural. I probably have  an epidural. It hurt that fucking badly that I had a panic attack and then when I woke up,  my ankle didn't move and every time I went to physio with that frame on, the pins around my  ankle got very angry at me because it was ripping my skin, my muscles, whatever. At that point, I kept on thinking I had infections but the antibiotics weren't doing anything and it  wasn't an infection. It was basically just something that I was told, well, if you want  to move your ankle, you just need to deal with it and what the fuck does that even mean? Like, okay,  I am in pain constantly but all of the stuff with the frame, all of the things that I have mentioned  so far, it is something that keeps me going on my bad days today because nothing is as bad as having  that frame on. Nothing is as bad as shitting in a commode that's basically 10 centimetres. That's an exaggeration. Two metres? I don't know distances,  right? So 10 centimetres and two metres are two fucking totally different things because  I know a metre is 30 centimetres. But 60 centimetres? I don't know. Shitting in my commode and then having to go to sleep with the smell of shit  surrounding me with pillows propped up in all different places because I  need to sleep on my back. I can't really sleep on my side because then the frame  digs into mother leg. Mother leg could only probably bend about 15 degrees at this point. Like, it was a fucking miserable existence. But nearly two years after the infection,  we started the process of removing the frame. After the consideration of amputation,  the active suicidal ideation, after being told that it would just be another year  that I would be relying on a wheelchair early on if I didn't try with the frame,  all of the fear, anxiety, pin infections that I was worried that were just going to go deeper. And then my leg snapped and I can't remember the pain, to be honest. I just screamed because my  leg dropped and I heard it break and I just started freaking the fuck out. But the first  words that came out of my mouth were, if my leg has just broken, then please amputate it. There was another option. To be honest,  it would always have had the possibility of amputation looming over it. Because of the  pieces of bone that I grew, it would also have meant waiting until they were ready. Waiting until these bones formed holes in the middle of them where a metal rod  could be put down from my ankle right down to my hip. No way that I would be able to  move forward with my life in that time, still on pause, just like it had been  every single day since my accident. Years later, amputation was a relief for me, not a failure. My head really was scrambled back then. I was in survival mode,  clinging on to whatever scraps of identity that I had left.  I was swimming in this thick fog where nothing really made sense to me anymore. And the thing is, I wasn't failing, but it really did feel like I was. It felt like my body was  betraying me that I'd already tried so hard to fix it and it wasn't enough. That I wasn't enough. That somehow this was a reflection of my character, not my circumstances.  That I was at fault. That this was all down to me and being inadequate. Which is absolute fucking bollocks, by the way. Complete and absolute utter  shit. That is not true in the slightest, but what it felt like for me at the time. And those feelings didn't just vanish after the amputation, they just evolved.  They shifted into new shapes. Not being able to get out of the house without help,  feeling like I wasn't confident enough to go on the bus, that I needed somebody to go with me. Still finding it difficult to take a shower, living off microwave meals,  not cooking proper meals because the kitchen isn't accessible and I couldn't stand long  enough to cook. It all felt like failure. And I know that these things are not failures. I can say it out loud and I can intellectually believe it, but emotionally it feels really  sticky, to be honest. It hangs around like this awful kind of cigarette smoke in your clothes,  like we're swimming in a world that tells us that disability is something to overcome,  to fight against, to conquer, be inspirational, or at the very least to be palatable to people.  Because if I can do it with one leg, chronic pain and mental illness,  then the average person should feel so fucking grateful that they don't have to deal with that. And if you're not conquering it, if you're just surviving, resting, adapting, slowing down,  then it does feel like you're failing, or at least that's the message that we're told. I do wonder  if this sounds familiar to you. Have you ever felt this way? I would love to hear from you,  whether that is you sending me an email, leaving a comment, whatever it is. I started looking into this, like is there research about this feeling that disabled  people are more likely to internalise shame or feel like we're not measuring up? And studies  do actually show that disabled people are more likely to internalise shame. There's  actual research backing up this feeling that so many of us carry. It is something  that I've talked about mostly in passing and that is called internalised ableism,  which is when disabled people start to absorb and believe the negative beliefs  that society has about us and it then also plays a huge role in our mental health. It's linked to feelings of worthlessness, depression, anxiety, and yep, you guessed it,  that creeping overwhelming sense of failure. I'll pop the links down below in the description.  One study that really hit me talked about how internalised pressure isn't just about  functioning, it's about your identity and trying to prove we're normal enough to belong, that we're  useful enough to be valued, that we have to earn our right to exist in the spaces that we're in. Let me say this very clearly, you are not a failure for being disabled. You  are not a failure for needing help. You are not a failure for existing  in a body that doesn't work the way other people expect it to. Period. And that's for the people that feel it, but also for me when  I need to listen back to this and remind myself that all of those thoughts aren't  true. Sometimes it is hard to put words to what those low times really felt like. When I was bedbound for two and a half years, when I couldn't shower for months, when I  couldn't even leave my house without someone else helping me, out of the house, pushing my chair,  carrying my crutches, it wasn't just the physical stuff. It was a thick cloud of shame that followed  me everywhere. This fog of isolation, of why can't I do this and why am I not feeling better yet?  There are some videos that I've shared previously, if I can find any round about the time, that I'm  talking about that resonate with this, then I will add these in when I am editing because I  feel like that's why I recorded them, for me to look back and remember what it felt like. But at that time, it also felt like I was alone and I know that there are a lot of people who  experience these feelings. So they're going to go in here if I can find them and if not,  then I'm going to move along. It's the 24th of August, 2021 and I've just been lying, thinking  about fear of abandonment and people leaving and how to deal with that and where it comes from. And I'm like, it definitely has something to do with dad leaving,  but I also think it has something to do with mum. I feel like I'm so scared that people  won't love me because if my mum can't love me, then who will? I hate it. I don't know  how I'm meant to stop those thoughts I don't know how I'm meant to stop those feelings. I know I can work on things like people are busy, people still love me, asking for reassurance but  I'm just, I don't know. It goes back to this feeling of do people actually like me? Do they  actually care about me? And I have the proof that they care about me but I just, every time my head  circles back to everybody could be lying to you and you'd never know and then they'll just wait  and they'll just all hurt you at the once. And that is a thought that has been there since I  was about 14 and I cannot make it go away and I hate it because it makes me feel so stupid. Because surely people aren't like that. But you don't know. So, today's the 14th of October. I'm done. I just don't have the energy to fight off all the bad feelings I've been  trying so hard to fight off since last week. It's just so draining. And I feel so alone so I just want to be left alone. I just  want to curl up into a ball and go to sleep. And not have to deal with this. I don't know how much longer I can keep feeling like this. And I don't know what  to do because there's nothing I can do to make it better. I'm trying, I'm trying,  I'm trying, I'm trying really hard. I'm trying so hard to be positive. I'm trying so hard to look forward. But sometimes I just can't. Sometimes I can't help but just be sad. Because it's not fair. I can get on with  it and I can deal with it and I can try and be as positive as I want but it's not fucking fair. It's shite and it sucks and I'm trying so hard.  Sometimes I just can't do this anymore. I'm so done. Why is nothing ever fucking easy? So I have had my little leg accessory on for  two and a half years now. And I had a clinic appointment today and they have told me that  my leg has healed enough for my frame to be loosened in six weeks time. And  then hopefully that means in 12 weeks time that this thing will be off my leg for good. I honestly can't believe it. Literally three weeks ago I had an amputation  appointment because I just want my life back. And I honestly can't believe it. Screaming, crying, throwing up. I can't wait to get my life back. I have no idea  what my life is going to be like with a fused leg. But I am so excited to find out. Honestly,  I can't wait. It is absolutely wild that I'm getting my leg chopped off in four days. What? Every time I sat on social media, scrolled past somebody with the same diagnosis. Injury from  a car accident, a laser off frame and managing to do more. Rock climbing with the frame on, working,  running marathons with a prosthetic, climbing mountains, being inspiration porn on social media. I feel like here I need to make a distinction that disabled people living their life is not solely  disability inspiration porn. But a lot of other society acts like it is. And I think sometimes  that's why posting for me is hard on social media because I want to just be living my life. But I also don't want to be made out like I'm such this brave and heroic person because she's  getting out her bed and she's brushing her fucking teeth. It does my head in,  honestly. Because I didn't know where I fit into the world. How did I be my positive, radiant self whilst also not being this disability inspo porn? Like,  I don't know if it's just, I feel like it's not just me that has that kind of feeling.  In the disabled community, when I see people doing things, I don't think, oh my god, look at  them doing X, Y, Z with that disability. I look at them and think, that's something that I could try. I might not be able to do it, but it's something that I could try. It gives me ideas of what is  actually possible instead of just looking at somebody and saying, well, they're doing that  and I can do that too. Because that's not really a way that I want to live my life. Do you know what? I wouldn't change any of it. I have said  it so many times at different stages in my recovery. When I got my infection,  why not have just amputated after the accident? I would have been so much further forward by now. And then when my leg snapped those years,  when I felt like living life with one leg was signing my death warrant,  I grew new pieces of bone. And let's be real, not a lot of this felt good. It wasn't. It was like living in absolute hell. But just like everything that happened  up until this moment, it made me who I am. And I actually really like who I am. Even if at the time I had no idea who that person actually  was. Even if I felt disconnected from everything and everyone. Even myself. But that's a part of trauma, I think. That's dissociation. That fog. The floaty, not-in-your-body, kinda numb. The numb where you're aware  that life is happening around you, but you're just not really a part of it.  You're watching it through glass, living on survival, trying to figure it all out. And at those moments, I don't know how, but I just kept going. Somehow,  even when I really didn't want to and even when I wasn't sure why. And even now,  I am still somebody who applies so much pressure to myself. I grew up in an environment where the pressure felt like  it could explode at any moment. And somewhere along the line,  I think I learned that if I could just perform well enough. Be impressive enough. Keep everything spinning. That maybe I'd be safe. That maybe I'd finally be accepted. But that is survival mode,  plain and simple. And survival mode cannot last forever. It burns you out. It steals your joy. And it makes you confuse hypervigilance for strength. And looking back,  I do truly believe that my accident saved my life. Because if I had kept going the way I was, running myself into the ground,  never stopping, never asking for help, I don't think I'd be here now. Especially with Covid,  the pressure on the NHS. I was crumbling way before I crashed. I was fighting demons that I don't think I could have kept quiet for much longer.  Questioning stealing medication but knowing the shame and guilt  got me from the inside out. And that was the only thing that stopped me. There are still times now where I slip back into that mode where I think that  I can do everything myself. When I overbook, overstretch, overextend  and then crash out hard. But the difference now is, I'm learning to catch it earlier. To slow down before I hit that wall. Sometimes, not always,  but I am really trying. And honestly, trying counts. It really does. And when I do mess up, when I forget to rest,  when I miss a podcast upload, when I say yes to too many things,  I'm trying to respond with compassion, not with shame. Because shame is easy to me. Shame is familiar, but it doesn't help. It only digs the hole deeper and it only makes me hate  myself when I'm trying so hard to show myself the love that I show others. When I first had my  accident, everybody that came to see me, I spoke about how I would be back at work in no time. When I had that first frame, in my head I was going to go back to normal and I was going to  go back to being Nurse Becca. But I ended up distancing myself so far from being a  nurse. After my healing took too long and my contract with the NHS was terminated. Because not being able to go back to work before my revalidation deadline,  that really did feel like failure. And if you don't know what revalidation is,  every three years, especially for nurses, we need to revalidate. Which  means you need to have done something like 200 or 500 hours across a year. And have five pieces of continuing practice development. And then also  reflections of what you've learned in those three years. And then you  get revalidated and you don't need to do it for another three years. But you should be keeping all this information for your revalidation to come up to it. It wasn't  possible for me. There were times where I thought, you know what, maybe this frame will come off. I've got a year, I can do those hours, I will revalidate. But when it didn't work out,  it felt like I'd wasted everything. Like all of that effort to get through uni,  to ace my placements, to make an impact, to be the adult I needed when I was younger. It was like I'd let everyone down. My family, my patients, my mentors, my past self who worked so  hard to get there. I ended up telling myself that maybe I would go back and prove everybody wrong. Maybe I'd march into that lecture hall, prosthetic leg and all,  and show them that I was unstoppable. That they were wrong about me. But why?  Why would I just live my life trying to prove others wrong? Isn't that what led me to the  burnout in the first place? I don't want to live for approval anymore, I want to live for me. Because being me, maybe it's softer, slower, maybe she doesn't always hit  the deadlines. Maybe she forgets to answer messages, but she's healing. She's learning  to breathe and she's learning what she's worth and what she deserves. She's learning that adaption is not failure, even if it can overwhelmingly feel like it  sometimes. Right now I really feel like I'm in a season of figuring things out.  I'm working on my mobility, I'm spending time with friends who actually get it. Scribbling down podcast episode ideas even when they're not getting posted yet. Thinking  about how I might become an advocate in the future. Maybe in the NHS, maybe not. But I'm not rushing, I'm not pushing, I'm just being and existing. And in a world  that demands so much, that in itself is moving forwards for me. That in itself is me healing. And maybe that's enough. Maybe just being in whatever body in whatever season with  whatever limitations is enough. So if you've been feeling like a failure because your body  isn't doing what you want it to do, or because your brain is checked out again, or because you  needed help that you didn't want to ask for, I see you and I promise that this is not failure. You're living in a world that wasn't built for you and of course it feels hard,  but that doesn't mean that you are the problem. Here's the thing that I'm  sitting with right now. I was bed bound for two and a half, nearly three years. Couldn't go outside with support. Wasn't able to wash myself in the shower,  I used the kitchen sink remember. I couldn't walk out of the front door and I only left  the house with carers, friends, family, in my wheelchair or worse on a stretcher. And then I had major surgery number 10 that changed everything. Even now people don't  realise how much I still depend on adaptions and support. I had to fight for access, appeal  benefit decisions, wait months for assessments and still I don't have a fully accessible kitchen. But I've made progress and I have really regained some independence. So when people ask me,  are you better now? It's hard to answer because yeah, I am better than I was but no,  I'm not fixed. I'm just learning to live in a body that needs different things. That's not failure, that's adaption and resilience. That's being human.  Thank you for sticking with me through another slightly rambly,  emotional little journey that I needed to get off of my chest. If this resonated with you or it reminded you to be a little kinder to yourself today then  I am truly glad. So here's what I want you to do right now. Think of one thing  that you've been calling a failure that might actually be an adaption. Just one and try just for today to see it differently. And I'm still working on episodes,  I have an episode that I am actually going to record next which is about  SUDEP and epilepsy. This is going to be a heavier one but it's an  important one and something that I've wanted to talk about for a long time. Until then, look after yourselves, show yourself compassion and remember, surviving isn't failing,  resting is not quitting and needing help is not a weakness. You're not failing,  you're adapting and you're actually doing better than you think. See you next time, bye!