To Anyone Dealing With Chronic Illness – I’m With You

Hello Friends.
Today and next week I want to share with you something personal. Something from my heart to yours. I want to connect with you from my own space of vulnerability, in the hopes that it will encourage you to embrace yourself fully - just as you where, where you are on your path, where you are in your cycles and in any pain or struggle you may be facing right now.
We are all on a journey that will never end. There is no 'after' but just a continual unfolding. You will and I will, always have bits that are put together, bits that make sense, bits that are empowered and bits that are still confused, struggling and searching.
And all of it is perfection.
I hope my share here serves to make you feel a little less alone.

I Was Born Ill:

I want to share something here not to garner sympathy or to try to get anyone to ‘understand’ or validate me or my experience. The reality is, I don’t want sympathy because I’ve very much accepted my lot in life, and because I realize validation really only comes from ME to ME.
I want to share because I know I’m not the only one in the situation that I’m in and I hope that my words and experience can serve to make this particular journey easier for others, and simply because I’m asked about this topic a lot, and I want to give clarification for anyone who does care.
The truth is - I’m chronically ill and have been for my entire life. I get lots of comments about my thin hair, thin body, puffy face, under eye bags, looking ‘old’ so on and so forth - and the reality is people who look at me and see sickness aren’t ‘wrong’ in that observation.
I've literally never been ‘healthy.’ Not one day for my entire life. I was born ill - having colic, high fevers, constant colds and flus, asthma, eczema, ear infections and failure to thrive - which grew into near constant stomach aches, chronic infections, insomnia, depression and so on as I grew. By the time I was 14 I was completely incapacitated. I stayed on the couch for 6 months straight with a lung infection, cysts on my ovaries and anxiety that had turned into complete dooms-day depression. At 15 I went into (what I NOW know was) a stress induced menopause. My gut was a total disaster - I have literally NEVER eaten a meal in my ENTIRE EXISTENCE AS A HUMAN BEING that didn’t cause me pain. Ever. Think about that for a moment. My very special genetics means that I was predetermined to be quite ill - and essentially by the age of 15 I was expressing almost everything I was predisposed to. PLUS I have always been super duper energetically and emotionally sensitive. Having no filters between myself and what others are feeling and experiencing. Not being able to turn any emotion off. Having no capacity to numb or even cope with ANY form of pain EVER. Not being able to go along with anything that’s ‘normal’ if it feels bad - which most of normal DOES and DID.
On top of this, my caregivers were deeply traumatized individuals who ended up severally mentally and emotionally abusing me for the first 20 years of my life. Not on purpose at all. They were just hurting. The situation we were all in together was simply over the top of what any of us could handle. My little body and nervous system were in such states of stress and panic and this exacerbated all of my underlying health issues.
For a plethora of reasons, I was never formally diagnosed with much beyond amenorrhea (unexplained, through several doctors, ND’s, Herbalists and other practitioners over the course of 10 years), depression/anxiety disorders and the few infections I got antibiotics for. But looking back at all the symptoms I had and the diagnosis of those in my family who had similar symptoms, I am sure I would have been diagnosed with systemic candida/fungal overgrowth, autoimmunity, adrenal exhaustion and imbalance, thyroid imbalance, parasitic infections, multiple ongoing infections, crones disease, fibromyalgia, chronic fatigue syndrome and adult asthma. All before I was old enough to get a drivers license.

I Didn't Make Myself Sick (And Neither Did You):

There was a LOT of damage done to this body and to this nervous system before I had any autonomy.
If you understand anything about trauma, you know that getting out, discovering that you’re traumatized, then getting the right information and doing the right things to try to undo that trauma is next to impossible. My world view and my self view were totally messed up and my body was in fight or flight all.the.time. My gut was a total mess. My hormones were fully shut down. My perception had been groomed from birth to be self defeating. I don’t know anyone who was where I was, who has gotten out as much as I have.
Going to doctors was hell on earth. Generally I would get no or a half diagnosis, and this would reinforce the narrative that I was weak and needy, driving me into deeper states of self hate and learning how to just ‘push through’ all my pain. At 15 I started to change my eating and tried to start taking control of myself, which again was really hard in the household that was (unintentionally) set up to stop me from doing this very thing. I had to work through my illness to make things work because there was simply no other option. No one was coming for me. No one had answers. No one really cared to be honest.
I believed I was weak for being sick. That I was a burden. Part of the reason I never share is because it’s still so deep in my system that asking for help or admitting I am sick is going to get me shamed, blamed, hated and told I am making everything terrible for everyone else.
***Now, before you start - yes, I’ve tried it.*** 😉
I know this may be hard to believe, but keto/carnivore/high fat/homeopathic and herbal remedies/high fat/low fat/seed cycling/elimination diets/fasting/fruitariansim/juicing/magical people who claim to have an ear to God/Ayurvedic and ancient Chinese medicine and so on - have ALL been around for a LONG time. And I’ve tried it. All of it. Many times. I got into natural health and alternatives over 17 years ago now. You are most likely not going to suggest anything to me I haven’t tried or heard of. Promise. Again, I’m not new to this. I’ve been sick a long time. I’ve been working to heal for a long time too. Thank you for your concern and for any part of you that wants to offer something to me that's worked for you. I am in NO WAY saying that your solutions aren't solutions or that they didn't work for you. If you are doing something that's really helping you - I am SO happy for you!! Keep on keeping in. Just know that for ME I have tried a LOT of things and am not working alone even in this moment. I have practitioners I work with, and again I am always listening to my own body and following the wisdom. I have healed on SO many levels and continue to. If I need help, I will reach out 🙂

Doing Something Different? It Better Be PERFECT:

I also recognize the instinct to look at someone who isn't perfectly healthy who has strayed from the mainstream diet/lifestyle, and to say 'see. Evidence that your chosen path is WRONG. You're clearly killing yourself with/would be better of if you left that diet thing you're doing.'
Again. Totally get it. If we are going to take the risk of doing something counter to culture, which then means we trigger in ourselves that feeling of be 'cast out' and abandoned, different and therefore ALONE and VERY VULNERABLE (which is what striking away from the mainstream triggers in us - a fear of DEATH, due to how humans have evolved in tribes and how we needed our caregivers love and approval for survival in our childhoods) we want to see that it delivers us to HEAVEN or we feel like it's not worth it.
For me, I didn't start making progress until I found raw foods. Again, I TRIED EVERYTHING. Raw foods was a last resort. I'm not a perfect poster child for the lifestyle. All I can say is that without this, I literally don't think I'd be here to be not perfectly healthy, maybe making people scared to be vegan because they might end up 'looking like me.' It wasn't a magic bullet. There are and were SO MANY other factors at play. Health is complex. Ill health even more. So It's a part of my path and it's serving me. Who knows where I would be had I NOT been doing this for so long.
I recognize that I didn't shoot to perfect - and thus there is an instinct to reject me because I represent doing something different, being different (that big threat to our survival that gets triggered when we see that) and it didn't = perfection. Therefore to most it's not worth the risk, and in order to get away from that feeling of being abandoned people want to reject ME. To look at me and find all the flaws. Rationalize that I am doing this to myself. It makes perfect sense as a self protective mechanism. We also don't generally like the idea that issues are COMPLEX and that there isn't 'one answer' that will solve all of OUR problems. So when we see someone who is saying 'hey, this made things *better* but not PERFECT' - it triggers in us the hopeless feeling that if THEY couldn't find that one perfect answer that maybe WE won't be able to either. The idea of a 'journey' for most of us just translates to PAIN FOR A LONG TIME. We want the ANSWER because that means pain stops NOW. We don't want to hear that things are complex and can take a long time - because again, that triggers too much fear in us. And that's ok. I get it. But this is reality.
At this point, I ‘should’ most likely be dead. Or very, very VERY ill. I’m the only female member of my dad’s side of the family that hasn’t had cancer at my age, still has all my organs, isn’t on any medications and doesn’t have surgery on a regular basis. I have to work hard, VERY HARD some days, every day, to keep myself functioning. Again, things are WAY easier NOW than they have EVER been. But it's not easy.
I’m not, for all intents and purposes, ‘able bodied’. I’ve been in chronic pain for my entire life. Even realizing this about MYSELF was a revelation because pain and sickness were so ‘normal’ for me, learning how to 'push through' pain was simply a REQUIREMENT for me, as there was no room for NOT doing this, and it was so internalized that it was my FAULT that to even SEE that no, I was sick before I had any agency and that being in pain isn’t ‘normal,’- took me almost 29 years to recon with. Admitting these things to myself without them being fodder for how I SUCK and am ruining my life and everyone’s lives around me by being a burden took a LOT of inner work.

I May Never Be 'Healthy' By Societal Standards And People Won't Listen To The Message Because Of That:

The reality is - I may never ‘recover’ from what happened to me. I may never get ‘healthy.’ But I’m WAY BETTER than *I* should be, given my history. Everything that I’m currently doing and have been doing over the past decade or so to heal, has been WORKING - slowly. I’m better now than I’ve EVER been. But I’m not well. You see? I had such massive DEBT - that I’ve been making payments on this very very damaged vessel for about 17 years now, and I still am not in the green. Please just take a minute to try to understand the reality of that. I’ve been working SO HARD for 17 years to get better. To reduce pain. To figure out causes. To be FUNCTIONAL. The amount of effort I have to put in to get through a day is over and above what most people will put in to getting through a month or a year. It’s just that my ‘disability’ and my pain isn’t visually obvious.
So I get it. I look like I’m just being irresponsible or not loving myself. Like I’m just starving myself for vanities sake. Or whatever people project onto me. I get it. I know. I validate those projections. We can’t ever really know what someone else is going through.
I get that for some how I look is a turn off. It makes it so that they don’t want to hear what I’m saying or they doubt the message because I don’t look well. I get that for some my appearance makes me look like a fraud - like I’m preaching 'all this self love stuff' while clearly not taking care of myself. If only you could see how far from the truth this is! How hard I have had to work to be ABLE to take care of myself like I do. How much I had to fight for myself when everyone was fighting AGAINST me. How much I had to take my own life into my hands at such a young age because doctors, health care practitioners and my caregivers couldn’t/wouldn’t help me. We have so much information available NOW - but 17 years ago NO ONE knew what was wrong with me. Nothing I tried ‘worked’ because the mess was SUCH a mess and it was all SO complex and I was still IN the root cause of so much of it. Healing was impossible.
I get that I don’t have a before and after story. I’m in the middle still. I’ve had to figure everything out on my own for the most part. Things for me weren’t like they are now where you can access all this information on the internet. I had nothing but my body, my feeling, my perception and the capacity to FEEL. I've FELT my way better. I've FELT my way into the way that I eat and move and rest and work and live and interact - one piece at a time.
Literally.
Everything I teach I learned through my experience. No books gave me what I have. I know that it can look like my health is a result of not loving myself - but just the opposite is true. Because I loved myself, I took the very radical path necessary to save myself. I would most likely be DEAD had I not.
Again I'm not ‘perfect’ - but I'm SO MUCH BETTER and I say that every year. That’s a miracle. If you really consider the mental and physical issues I had, and how isolated I was in all of it. And I can’t say ‘here I’m done and perfect! Got it all sorted out!’ I can say ‘I am WAY better!’ But most aren’t inspired by better. Only perfection. Which I’m not sure actually exists outside of the curated world of social media.
I want to share this story of mine now because again, I want to break the mold. That there is always a shiny bow on the top of every story. That there is always some ‘solution’ that is the ‘answer’ and then heaven forever. Life will always be life. Struggle will always exist. Who knows what the future holds for me and my health. I'm not here to say I know. I'm going to try forever to keep getting healthier, knowing that I have no idea what my potential actually is. I hold both of these realities. I live like I can get to perfect one day, with the awareness that I have to love who and what I am NOW because this is all I really ever have.
Now.
This.
With the imperfections that exist here.
I find peace in them - even on the hard days - because I know that ultimately joy comes from loving what is. Including the resistance to what is, which happens some days 😉 I’m not a perfect before and after. I may never be.

I love me anyway.

<3
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See you next week for the rest of the story!

perceptiontrainers

Author perceptiontrainers

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Join the discussion 7 Comments

  • S Rose says:

    Thank you for sharing. I have dibilitating health issues that I believe came from severe abuse and neglect from my birth until I went to college and moderate psychological abuse until my mid 40’s. I take a lot of steroids for my asthma. I am obese and people judge me for that. But I be been on a healing journey and psychologically and psychically I’m doing great. My physical health will never be normal. I’m in chronic pain and will be until I die. But I’m mentally free and no one is abusive outside of my toxic job. (I retire in less than 3 years with a pension so I’m tolerating.)

    • perceptiontrainers says:

      Hi S – thank you so much for sharing with me. You have been through SO much, and I am celebrating you so deeply in your capacity to have done all that you have for yourself. Truly. I have so much respect for you and your journey. You’ve inspired me greatly here. I am sending you so much love, validation and witnessing – it is a big deal what you’ve done for yourself and I hope you know that.

  • Es says:

    I feel like the being in the middle and not having a before and after story really resonates with me right now. Seeing you be as you are and share what you’ve learned on your path so far is inspiring. I like the idea of trying forever to keep getting healthier with awareness and acceptance of the state I’m in each step of the way. I’ll do that too.
    Thank you, Ali, for all the work you’ve done to get to where you are now. Thank you for sharing.

    • perceptiontrainers says:

      We are all in this together, and really, we are never really ‘arrived.’ Life is always, always a journey! So happy to be walking this path with you Es, thank you for reading and for being here <3

  • Verity says:

    Ali! ❤️

    Thanks so much for sharing ❤️

    Not sure if you’ll get this email but I completely resonate with what you’re saying.

    I have overdone it and picked up a virus and feel crap again and was just thinking, no one able bodied will know how f*cking bad ill health is!

    Also that people using your stumbles as proof that what you are doing is a load of crap. I have that LITERALLY EVERY time I take a step back with my family. But I know I am on the right path and I know you are and you have helped me so much with building a strong core so I don’t care what people think; I know what works for me : )

    Maybe this is completely out of place to say but following you saying people comment on your appearance.. you are beautiful! I was watching your video with a (male) friend the other day and the first thing he said was ‘who’s she, she’s pretty’. I know this is probably irrelevant to you but I just wanted to pass that on regardless : )

    Also, I know people passing on their health things is LITERALLY the most exhausting thing in the work when you have done bloody everything and you have said you don’t want any advice BUT.. just in case..! This health clinic I am going is completely revolutionary technology wise. There are machines it uses to revitalise organs/cells/ bring vagus nerve back into homeostatis etc.. (on top of holistic advice you are already following) I know it sounds a bit phoney and too good to be true but it’s not! It is however, a huge time and financial commitment; I have been in the clinic twice a week for 6 months and think I’ll need at least another 6 and I’m not sure where you are and where there are clinics. I know there is one in the Philippines. Anyway, http://www.healthoptimising.co.uk is the London branch.

    Hope that’s not too annoying passing that on. I’m confident they could help your situation but equally I know what it’s like to be told that!!

    Sending you love xx

    • perceptiontrainers says:

      Hello Lovely! First off, it’s always so lovely to hear from you. I really appreciate your perspectives and experiences and really appreciate you sharing with me 🙂

      It’s so true – it’s such a difficult thing to really convey what it’s like to have a chronic illness with people who feel good. It’s just SUCH a different existence. I’m honestly so sorry that you’ve had to experience this in your life, and I’m just celebrating you so deeply in the fact that you’re doing what you need to do for yourself even in the face of being rejected and being told that what you’re doing isn’t real if it doesn’t ‘heal you’ right now. People just fear disappointment or having to change SO MUCH and are ALWAYS looking for that reason not to bother. I’m sorry that they project that onto you – and I’m so happy that you have the strength to go on anyway. That’s HUGE!

      Honestly, that is incredibly sweet to say – thank you. I don’t think any human will ever TRULY be over being given a compliment 😉 Thank you for sharing that with me <3

      I will check it out! Totally not annoying. I value your opinion my friend.

      Sending you a million hugs <3

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