69 Comments

Thank you for the heartfelt and honest post Erin. I felt a secret smile reading your words that "As a highly sensitive person, I’ve always been told I’m ‘too sensitive’; ‘too emotional’; ‘too deep'."

In my own life I've often been told that I am "too serious." It took me a long time to realize that it's okay, that's just a part of who I am. And to find the way to be the best sort of serious person I can be. I see your post as an example of you being the best sort of sensitive, emotional and deep person you can be. I admire you.

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It's taken a long time, but over the years I've tried to see all the great qualities that usually come along with being a highly sensitive person, like a vivid imagination, a good listener, deep empathy, kindness and super thoughtful. I bet you have all those lovely traits too!

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So sorry you are having such a hard time but I'm so glad you're sharing it with us all here. Well done and keep going!

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Thank you so much Sue, that really means a lot x

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Hi Amanda, thanks so much for the shout-out to Carer Mentor. I'm SO glad that you feel less alone and connected. This is exactly what I hoped to achieve by building Carer Mentor.

It's especially lovely to read this as I'm wiped out with COVID chesty cough, and I've just navigated Mum through blue-lighted admission to A&E, and 3 days in hospital with COVID and pneumonia (thankfully final diagnosis not sepsis!) Nearly cried to the GP on the phone this morning (econsult for me to get medication).

I'm grateful to you for sharing your words and thoughts so that you can enable others to feel less alone. Every single person makes our communities happen; sharing with empathy.

This COVID variant sucks BTW!

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Oh Victoria you poor thing, that sounds absolutely rotten. I do hope you have a speedy recovery. Thank you so much for all your lovely comments and encouragement over the last few months. That's exactly it, sharing with empathy. Thinking of you. Lots of love x

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Thanks hon! YES rotten and I've used LOTS of colourful expletives on Friday when many triages were an issue, and on Monday when blood tests were delayed for Mum and led to the possibility of a discharge in the night...(these happen often in the UK) So I had to keep strongly advocating and camped in her room. Still raging. Since she had COVID she couldn't be turfed out onto the general ward but also compared to Dementia patients shouting & roaming corridors we got forgotten about. All as my temp spiked. (oops raging).

Keep going hon. I look forward to reading more...I'm off/on right now running around caring for Mum...and ensuring my own symptoms don't escalate.

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Bless you, UK hospitals at the moment are tough. Why does everything always happen in the night! Sending you strength x

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Thx hon. Ohh that’s so kind but pls save your strength for yourself. We’re home, safe & neighbours are primed. In hospital I felt vulnerable. Here i feel i can manage & get help for me & we’ve what we need for mum right now. Xo

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Hope you and your mum are feeling better, Victoria. Sending love.

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Thanks Josie, Mum’s feeling a little better but I’ve v painful throat & little voice. Seems like COVID + Strep throat! Prescription is nearly here tho. thanks for the love. xo

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Amanda, thank you for your writing and all you are doing to help others heal. Thank you, that is, for being a nurse.

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Thank you for your lovely comment. I always do wonder if I will be well enough to go back to nursing one day. But I know for certain that you 'can't give from an empty cup' as they say. It can be difficult to put yourself first and rest, but I'm glad I can still help in my own small way at the moment through writing :)

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Hi Amanda! Thank you for sharing some of your story here--from struggles to sorrows to connection and beyond. 🫶🏽 I love how Substack is a place of healing for you! There's so much power in being seen, heard, and held by others. It's like a virtual hug that goes on and on. 🫶🏽 While I don't have an autoimmune disease, I feel like I can relate. A freak family friendly hiking accident that should have killed me in 2008, didn't, but left me disabled. The "odd" thing is, that aside from having a crooked eye now, I present pretty normally. But, I have no peripheral vision or depth perception, so can no longer drive. And I also had a severe traumatic brain injury, which impacts my memory and the speed at which I can process and do things. So, and I hadn't really thought of this until just now: Looking and presenting "normally", but not actually fitting that category, sometimes leaves me feeling like a stranger in a strange land. Thank you for sharing, and helping me realize that! 🙏🏽 I hope you have a lovely day. 🫶🏽

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Thank you so much for sharing this. This is something I am still struggling with also, looking 'ok' from the outside but feeling awful inside, the invisible illness so to speak. Like you said so wonderfully, it's feeling like a stranger in a strange land. I've always called it limbo land. I'm not quite well enough to join the 'healthy' folk most of the time, yet I look perfectly well from the outside. I often felt like I had to constantly explain myself to others and why I couldn't do certain things, but I've found over time that the right people won't make you feel like you have to explain anything, they just get it, and that's where this lovely community has been so wonderful!

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You're welcome, Amanda! I find the more we share, the lighter and brighter things get. I am SO with you on, and love how you say, "that the right people won't make you feel like you have to explain anything, they just get it." Yes to that, and yes to you!!

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I wholeheartedly agree. Our stories heal. Wishing you pain-free, healing days.

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Thank you so much Janice :)

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Wonderfully honest and raw. Thanks for sharing your journey. And I really like the question: What chapter in your life are you in at the moment? We journey through so many chapters and are not defined by any one in particular but all of them tell our full story.

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Thank you Marlo. I love what you said 'We are not defined by any one chapter in particular but all of them tell our fully story', that's so true :) A very good reminder x

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It's one of the most important stories I've read on Substack or Medium. It certainly demonstrates the power of community. The stories we read won't necessarily heal us, but knowing there's community and learning from others is so helpful.

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I've just entered my 78th Chapter. In just a few hours, I'll find out if surgery will allow me to walk more than a few feet again. It's a milestone I'm mentally prepared for. Thank you for your inspiration this morning.

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Thank you so much for sharing. I think community was the core missing puzzle piece for me. I could do most other things in isolation; eat healthy, exercise, rest etc, but I felt there was something deeply missing. When I started to share my story with others who understood, something just clicked. It's been such a game changer for me.

I wish you all the best for your surgery and I will be thinking of you. I hope you have speedy healing and a smooth recovery. All the best x

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Thank you.

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This came right on time. I recently experienced a medical emergency, while I also navigate the health changes of midlife. Thank you for your words, they give hope and encourage me to share my own 🩵

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Hi Liz, thank you for this. I'm so sorry about your recent medical emergency. I wish you all the best on your own health journey. I'm so glad to hear this article has encouraged you to share your story, the world needs to hear your voice x

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🥹 appreciate you

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Thank you for sharing your story with it's physical and emotional pain, but also hope for healing and joy in creation and community.

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Thank you so much Lisa 😊

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I want to tell you not to give up hope of living a good life with AS. A very good friend of mine has lived with it for decades now. I won't say that it is an easy existence. She's had multiple joints replaced multiple times. She has to plan her weeks and days to make sure she does not push herself past the point of too much pain, but she lives a good life, nonetheless.

A nutritionist friend suggested giving up wheat in her diet. It has made a tremendous difference in her pain levels, especially post surgeries. Wheat, apparently can exasperate inflammation, so by cutting out wheat, she has been able to cut back on pain medication. YMMV but it is a low impact intervention that might be worth trying.

Thank you for sharing your journey through this and I wish for better days and health for you.

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Thank you so much Anne, this is really reassuring to hear. It's easy to get swept up in negativity sometimes, especially when Doctors aren't always the best in dishing out hope along with their diagnosis.

That's super interesting about the wheat as I've slowly started to eliminate this from my diet and noticed a difference. Even some NHS Doctors have suggested I cut it out too because of it's inflammatory associations. Thanks again x

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I’m glad you are having some lessening reaction from giving up wheat. It was kind of life changing for my friend, but as with all these things we don’t know everything about, YMMV. Best of luck for living the healthiest life you can.

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What are you doing in my mirror? I was just saying this yesterday to someone about Substack. Oh to be seen and felt. To be understood. Sublime. 😍

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How lovely to hear this 🥰

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'They told me I was ‘just anxious’, yet never offered any substantial solutions.'

Damn...that right there is a clear failure of the system to care for its people. Sorry that you're dealing with this debilitating condition, Amanda.

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Thank you. There are some wonderful people that work for the NHS in the UK, but sadly the system often fails both them and the patient, it's under so much pressure at the moment. It's easy for people to slip through the net. I've learnt over the years you really have to be your own advocate. I'm glad I didn't give up.

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“But here people crave authenticity and vulnerability because they know that is the way to true connection.”

This is so true. I find it beautiful to see how a shallow connection can instantly deepen when we drop our facades and share something truly meaningful with one another.

Great essay, Amanda. And wishing you all the best in your healing chapter.

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Thank you so much Claire. It can be scary to take that leap and be vulnerable, but it's been so worth it 💞

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Thanks for this, Amanda. I've just been diagnosed with undifferentiated inflammatory arthritis. I think the impact of such diagnoses, alongside finding ways to live with the physical and mental restrictions/impacts of autoimmune diseases, is seldom truly acknowledged. Talking, sharing, considering together are all vital elements of being heard individually and collectively and of making sense of where we are and what 'healing' means to us in that space. Keep sharing and encouraging. Thanks again. 👏💚

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Thank you Jax, that sums it up perfectly. I'm so sorry you're going through something similar. But I'm glad we can both find comfort in places like this 😊 x

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Here's to that! And an acceptance of day-by-day. x

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Than you for sharing your story. You deeply inspire me and as someone also navigating this life either a disabling condition (TBI/PTSD) I’d like to connect. Community helps us feel less isolated, and as someone new to Substack, I’m seeking this connection with my Goonie family… you give me hope I can find it here.

@mindfuldinajoy

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Thank you so much for your lovely comment. Welcome to the gang 🥰 I hope you find Substack as inviting as I have over the past few months x

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Thank you

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