Living with Autoimmune diseaseI can pinpoint the exact date my catastrophic downward health spiral and hence my journey living with Autoimmune Disease (and CFS) began. You do tend to remember with crystal clarity when (overnight) you transform from being a healthy fit 16 year old to someone plunged deep into the midst of illness and fear.

I was thrown into the all consuming chaos on New Year’s Eve 1995 to be exact, just a few months after we had relocated 200 miles to Kent. A year of massive change climaxing in to something far greater than anyone could ever anticipate.

And not in a good way.

My friend Emma had come down to stay with me and we celebrated at a pub with a group of people we barely knew, feeling the (heightened) self-consciousness of being teenagers wildly out of our comfort zones. To be honest whilst we were determined we would ‘be out’ as the dongs chimed Midnight, the dressing up and giggles getting ready together were a millions times more fun, and secretly we were both relieved to get back home as soon as we could – our reputations in tact at least.

I remember the night so clearly. A sense of unease and apprehension mingled with excitement. Wanting to fit in and build up my social life in this new place. I wore a short black dress with a shiny silver T-shirt. My Denim jacket in no way sufficient for the freezing cold 20 minute walk we took.

In hindsight I’ve often wondered if something so simple as switching that jacket for a cozy fleece parka could have saved me? If I had never caught the Flu that night would I have never developed a Chronic Disease?

Crazy harrowing thoughts…

(Which I know are completely unfounded.)

And besides, I already felt slightly overdressed amongst these new alien people brazenly wearing their Mum’s bright red shift dresses and high heels. At least Emma and I had tights on!


In truth I know that the stage was set for my Autoimmune Disease + CFS (and overlapping health complications) to develop a long while before it was presented with the ideal opportunity to emerge. A combination of perfect circumstances, coupled with a strong genetic predisposition, and likely unknown past infections.

Add to this a complete lack of any healing knowledge (on my part) and you can get a sense of the overwhelming chaos.

Thus, once triggered this intensely dramatic roller-coaster ride took on a speed and direction of its own and I was simple an unwilling and increasingly terrified passenger clinging on.


I woke up that New Year’s Day with a raging sore throat, aching all over and in total pain. I had never felt this ill before. To be fair, aside from the odd traditional childhood illness I had never really even been sick. This was the Flu and it felt terrible!

But at least it would only last a few weeks right?

For it is the the duration of time and missed life trajectories which takes this type of severe chronic disease to a level most simply cannot imagine.

Actually, what happened was that although I initially picked up a little from the acute stage I never really recovered and eventually I was diagnosed with ME/CFS. Yet, even then I knew in my heart that there was much more going on which the doctors were missing. I could feel it deep within my bones. A fearful premonition and dreadful insight that whilst things were ‘okay-ish’ for the time being, and during the first 5 years, that this was going to get worse before it got better.

Much worse.

And I was right.

Following University I became bed-bound and severely poorly in a way I cannot even describe. For a couple of years perhaps. I couldn’t cope and I didn’t. I broke down. survived. Just about. Progression to being primarily housebound then cuts a (very) long story short to fill you in on the extremity of it all.

People ask me how I felt during the worst phases and I had no sufficient answer. All I could manage was;

“It is like having the worst hangover combined with the Flu, and x 100.”

Or perhaps;

“Running a marathon on no food?”

And of course as the body faces this onslaught it sends out constant stress signals meaning severe anxiety regularly occurs from a physiological level.

Yet of course the truth is still always a million times more complex and my words lack the insightful conciseness and accuracy needed to portray this physical and mental nightmare. I didn’t understand what was happening to me (back then) so I couldn’t even begin to explain it to others.

My identity and self-worth diminishing daily as I retreated from the world.

At a time when I should have been tentatively embracing adulthood I was weak and vulnerable. Fear ever present and sky high. My family my everything. A million feelings impossible to convey nor process. Everything had changed…… And then once I got stuck in the deep murky depth of it all, it felt like nothing was ever going to change again.

Heartbreaking for everyone involved.

Only someone who has been there or lives with a sufferer will ever fully comprehend.


I was eventually additionally diagnosed with Hasimoto’s Disease in 2000 which is an Autoimmune Thyroid condition where the body begins to attack itself. Replacement hormone is needed but in my case this also caused confusing (and unusual) reactions. My adrenals were a total mess and replacement was also sought here, but again the path was too rocky. As time went by the diagnosis’ (and labels) built up to include POTS, Hypermobility, mild Lupus, potential Addisons and more. Nothing was getting better I was just painfully trying to ‘band-aid’ a few things along the way. Thus,  I knew that there was still something major which we were missing. Something to under pin it all…

Slowly my mindset began to alter as I understood more than the mainstream doctors seemed to. As I understood the hidden controversies and limitations of a health care system. Fundamentally I wanted more than the offers of drugs which mostly didn’t work, and which would only add more stress to myself system over time. I was (and am) committed to healing and recovery at the deepest levels. Open to ALL models of health care I continue to become my own best doctor and to experiment as I go, and as I am able to access leaders in the field.

Don’t get me wrong if a drug is a good fit and works I will take it happily and be grateful. But, for me, it’s been… complex… and at this present time (2018) my body is rejecting all medication and even basic supplements, and the last few years have been ones of relapse.

And yet, deep within I still trust. Amongst the sadness and despair there remains hope. And more than this there remains trust. That I will rise. And shine. That I can try to – even from here. That I can fail – because I am here – too.

A life very much of lessons and great tests which cannot be trivialised. A reality which cannot be ignored, and which I am no longer in any way ashamed of sharing or expressing or feeling.


In late 2014 (19 years from the onset) I managed to discover the first real clue to understanding how my symptoms and conditions all fit together – when private testing (overseen by a professions at Kings College) revealed a positive Parvo B19 Virus result. This was the clue which confirmed that ‘immune dysfunction’ was at the core. The crucial part was that although this flu virus was active within my DNA, my IGM antibodies were negative meanin that my immune system is no longer responding to it – which is very rare.

Alas It seems that in fact really I have indeed had the Flu for 22 years!

Wow!

Proof at long last and an extraordinarily bittersweet answer which rocked my world!

Shock. Amazement. Relief. Gratitude. Hope.

Euphoria and a million questions arose……

“Maybe now I can stop blaming myself for not getting better results?”

“Maybe now I stand a real a chance at recovery/treatment and can let myself dream of one day getting married, having a baby and having a job?”

“But how was this not found earlier???”

Looking back I believe the Flu infection was severe enough to encourage the trigger of my Autoimmune Disease and was the catalyst for all that ensued afterwards. And clearly the environment was ‘right’ for me to be affected so dramatically. 

However, most people do get over Parvo Virus, so still something niggled? Especially when we realised IVIG treatment was ethier accessible nor advisable in my weak state.

I knew there was more digging to be done…

From here Lyme Disease was brought into the picture as a potential reason why my immune system was not responding right. And entering ‘this world’ has led me to much more understanding of the whole picture around infections, toxins, and chronic illness. The body can only take so much. Too many triggers (mentally and physically) will eventually be felt – within the right circumstances/environment – and from here there is an inevitable downward spiral as all the systems crash and the immune system  no longer even attempts to stay on top, and further infections and pathogens take residence.

As more and more accumulates and the system weakens the ‘backtrack to health’ is as potentially dangerous as it is difficult. It is a vulnerable and precarious position, hence I live in a body which feels often as though it can barely tread water. I certainly did feel as though I was drowning back in the worse days. And many times since. But somehow I am stronger within myself at least, even if recently I admit feeling close to breaking point once again. I use all the tools I have learnt, and I practice mindfulness and gratitude as my soul hopes I can find a way out of the maze. As I (recently) fully begin to allow my heart to speak and feel and release. As at my most rock bottom I am guided by something ‘ higher’. Because I won’t deny that there is a lot of trauma being so unwell for so long – without a break.


My wish that my current knowledge had been there at the beginning a fruitless one, the fact is that at this point, this far down the line, recovery is as complex as one can imagine, and I will never know for sure the true order of how it unfolded, only where I am currently at. 

So, just how do you even attempt to unravel 22 years, and put the pieces (and yourself) back together?

You do with courage, strength, intelligence and tenacity.

And above all else you do it with faith, spirit, belief and truth.

You find your true soul beneath the illness and you both feed and shine it constantly.

And you feel what needs to be felt. And you release the emotions as you go.

You somewhat lose expectation.

You find connection, purpose, meaningful friendships and support.

You aim to access flow and self-love as your anchor.

Recovery and healing begins with yourself. You need to find the root causes and initial triggers and question if your CFS could be infection based. You will need to become your own best Doctor and this will be a full time (and unpaid) position. It takes a very long time and I admit that I am very much still a work in progress myself. In fact, I cannot quite believe how much so. Genuinely, for all the work, all the simultaneous commitment and surrender, it feels dreadfully unfair. And yet, I cannot think this way. But I can feel the frustration of it, and lose the judgement of doing so.

Alongside this you need to become your own best Guru because inevitably this journey leads you along a soul path too.

And that is perhaps the real blessing.

Living with Autoimmune Disease


Here are my 8 top tips for creating the Mindset you will need when living with Autoimmune Disease:

Acceptance:

To begin to get over something you firstly need to acknowledge it, and this is the tough part. You must face it even if in stages as you go/grow. This is not the same as giving up. It is the opposite. Basically ‘it is what it is’ and once you know what you are dealing with you can form a plan. However, as time goes by, acceptance may also mean changing your visions if they don’t end up playing out – and allowing yourself to feel the loss of this. Acceptance is about accepting yourself and where you are. It is permission to be exactly who you are regardless of what is unfolding.

Peace:

Once you have ‘Acceptance you need to seek some level of Peace. Healing cannot ever come from a place of anger or desperation. Find Peace with where you are right now by knowing that this is the path towards a better brighter life. Begin to explore MEDITATION or GENTLE YOGA as a way of connecting to a higher spiritual self, and to calm the nervous system down. From here your body can get the proper rest it needs to be ready for the journey ahead.

Hope:

Things may get really tough. Hope will at times be all you have left. Keep the faith always and immerse yourself in recovery stories and positivity. Know with all your heart that this will get better.

Kindness + Love:

To yourself first and foremost because this is an incredibly difficult challenge and many people will not understand. You are doing your best everyday. Give yourself credit, take the pressure off, and be proud of yourself. Indulge in yourself often. Also be kind to those who help and support and love you. It will make you feel better too.

Forgiveness:

It will take time to forgive those friends/family who leave you and those who judge you. It may take longer even to forgive yourself and your body for failing. To rid yourself of the thick heavy guilt of somehow causing this or for being a burden. I believe long-term (invisible) illness is one of the biggest tests of character one can face. Dealing with the all consuming harsh physical reality alongside judgement and stigma is beyond overwhelming and unfair. Release it all and forgive when you can.

Truth:

Lose the shame and be open and truthful. Face it yourself too and use writing as a form of expression. Feel what you need to feel and share with close friends. There is grief and loss and fear which you should acknowledge, but also know that illness does not define you nor decrease your essence and worth within the world.

Dedication:

Focus on everything you can do to heal. Explore, research and commit to well-being. Practice good nutrition and lifestyle. Use this as a learning opportunity, and learn to love the wellness world. Absorb all the knowledge out there and become your very own best doctor. Don’t be swayed but the ego and other people. Trust your own instinct and be prepared to consider combined approaches and concepts. Be prepared to take time off and surrender too if this feels right, because most of all healing is about being intuitive.

Purpose:

Find your passions and indulge in creativity and play for the fun of it. It will remind you who you are at heart and may well lead on to purpose – as my own writing and blogging has.

Courage:

Finally the stage will be set to implement all these changes and to dedicate your life towards this action plan of healing and spiritual growth you have created. Courage will also be needed each time your plan fails. Each time you are backed against a wall and can see no way out. Courage will be needed the most when you don’t see results, and when you have to begin to challenge yourself without better health. But you have it in spades. You would not be at this point if you didn’t.

Action + Growth:

This only requires baby steps and it doesn’t mean that there won’t be set backs unfortunately. Just stay brave, stay strong and continue to nurture and nourish those foundational roots which you are building. Or at least set the intention to do so. The smallest action (physical and emotional) can trigger the greatest result. It all counts. Above all be open to the flow of life as a mantra, and see this as a journey towards growth and expansion – however it unfolds.

Gratitude:

Above all else find joy and gratitude in everyday life. There is always so much to be grateful for in every circumstance. So much love and beauty in the world. It is true that many people have lives so much more difficult than our own. More so than I could even begin to imagine.  Value and respect the people who care and hug them tight. Notice the rainbow, the stars and the sunsets. Dance, sing and giggle as much as you can. Be present and as positive as can be – without denying any emotions which need to surface too. A smile goes a long way and can help to set you free.

+++++++

*All of the above are ongoing and even now there are areas which I need to work upon – mostly around forgiving myself which was a huge revelation as I wrote this article.


Healing and Recovery from Autoimmune Disease + CFS + Lyme is a unique and individual path. There have been many humble lessons I have learnt along the way and the most valuable of all is that whilst THIS is certainly my story and I share it openly with you, I AM NOT MY STORY and I AM NOT MY DISEASE.

This is simply my journey which I navigate as I go…

 

Love + WishesCarlyxxx

Read more about my story here.


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33 comments on “Living with Autoimmune Disease + CFS : I’ve had the Flu for 22 years”

    • Thank you lovely. It was a nervy moment pressing send. I hope my other posts combined balance out the ‘seriousness’ of this one to give an overall balance. I want Living Brightly to be a happy space but I’ve realised its important to include the raw + real stuff too – albeit in as positive manner as possible.
      Honestly I feel so odd feeling called ‘inspirational’ – I struggle to feel deserving really – or more so than anyone else anyway I guess. I believe we all inspirational and all doing the best we can with what is thrown at us and the character traits we are given. Writing this blog is certainly helping my self worth and confidence I believe so thank you again for all your support. xx

  1. Hi Carly,

    Your 8 points to dealing with chronic illness are succinct and perfect. They are the precise recipe I use to do life with ME/CFS.
    My condition came on following a bout of mononucleosis when I was 16. I had been an elite gymnast and high academic achiever prior to this.
    I managed a diagnosis just last year, at 29. The experience of the intervening years – (the lost cognitive function, jobs, homes, relationships etc,) living with an invisible illness is beyond words to express, and frankly unbelievable to most people.

    I identify very strongly with your experience and enjoy what you write… It could be my own words.

    Practicing those 8 steps above I now have a sense of self worth growing and a version of life that promotes my wellbeing. Thanks for what you do with this blog. Take care xo

    • Hi Jess,
      Great to hear from you and thanks for connecting. It sounds like we have a similar story – bar the elite gymnast bit! 😉 haha
      Im so glad you liked the post and you resonated with it. That is great for me to hear.
      I hope you continue to make progress with your wellbeing path – its a long journey but so rewarding in places isnt it? I hope we both reach fabulous health from all the work.
      Thanks so much again and stay in touch and let me know how things are going.
      With Love
      Carly x

  2. I’m so sorry that you have it that bad. I’m not as bad off as you and I hate it bad enough. I wish us all wellness.

  3. Hey Carly,

    Thank you for opening up to everyone about your true feelings and the pain you have put your self through as I think that is the biggest key to ever deal with.

    As an ME Suffer along with many other illnesses for the last 18years diagnosed about 12yeara ago following a car accident and mugging, everyday is the joy of flu like symptoms and as I also like to discribed it a hang over without the drinking!

    I have met many people far and wide with ME, who dealing with the acceptance and starting to realise blaming yourself actually makes u worse. Truly seeing it written down in black and white this morning from your words I feel will help so many people realise that it’s normal to do it and given ways to help cope with it.

    That’s what most doctors dont realise is, if they have simple short coping strategies to offer suffers then they have something to work towards.

    Thank you for giving me the ability to know I’m not the only person who feels like u, that my friend is priceless x

    • Thanks so much Chloe. Sorry to hear of your own struggle and I hope things improve for you. Chronic illness has so many layers and repercussions doesn’t it? Its affects much more than people realise and I think everyone feels this way – so no you are definitely not the only one 😉
      For sure, coping strategies and Mindfulness techniques are not a cure…. but yes they give us something to work on and begin to build the best foundations possible for ourselves… alongside food and other holistic measures – which are all fundamentals. Take care and thanks for connecting xx

  4. It truly does have a healing effect to know of others coping with such difficult & ongoing Health Challenges. It’s been a very long, strange & lonely road for myself. It requires much fortitude to go forward every day. I know the feeling of shame for not being able to keep up & live a so called “Normal” life. Presently, I’m 6 years out from a diagnosis of Non-Hodgkins Lymphoma, researchers have made a connection between Lymphoma & Epstein Barr Virus, though they’ll never say what caused the cancer, frankly they just don’t know. Thankfully, Chemo has treated the Lymphoma but has left me with severe & Chronic Fatigue worse than prior to the cancer. Thanks for your encouraging Spirit.

    • Hi,
      Thanks for connecting and so sorry to hear of your own struggles. It sounds very difficult. Keep the faith and stay strong. I believe we can do lots to aid healing alongside anything else we need. I continue to take it day by day myself but starting writing has been very therapeutic as I feel like I am finally doing something worthwhile. I hope so anyway. Thanks for your support. Take Care.
      Carly xx

  5. Carly, Your story touched me deeply as I have been suffering from the same thing, persistent parvovirus b19 and it’s literally wreaked havoc on my entire body, my immune system, my autonomic system and my joints. I am inspired to now read through your blog more and see how we can possibly connect. Thank you for opening up and sharing your story. Melissa

    • HI Melissa,
      Thanks for connecting here and in the forum. Its great to meet people in a similar position and learn more about ways to help one another. I would love to hear more of your story if you want to connect privately too. How is your IVIG going? At the moment I am just doing all I can to aid healing on a foundational level – mainly because thats all my body seems to accept – although its hard. And also because I am still waiting to hear about IVIG although I understand I still need to do as much as I can to reset my own immune system as there must be a reason why it cannot fight the virus itself. How are your antibodies?
      Thanks so much for sharing my post too – I love to hear feedback. Take care xx

  6. Wow, we could be twins, my autoimmune issues were also triggered by viral, began at 16 and I am now 46. Took almost my whole life to find root issues thanks to my Dr trained by the Institute of Functional Medicine. My body wears the scars from what the medical industrty left behind. Their answers almost killed me. Blessings to you.

    • Hi, wow so how are you doing now? I love to hear recovery stories – keeps me hopeful 🙂
      What was the root cause for you and how did you treat the virus if I can ask? I have done a lot of functional medicine work and anti viral herbs but I need to understand and fix the compromised immune system. Take care xx

  7. Hi,
    Thank you so much for writing such an articulate and heartfelt article. Something has been very wrong with me for the last six years and to this day I’m not sure what’s going on. Your story sounds very similar to mine. How did they discover you had parvovirus b19? Any
    advice would be much appreciated.
    Thank you! Crystal

    • HI Crystal,
      Thank you,
      Sorry to hear of your struggles. I found it by chance as we knew there was likely a viral aspect but it is a bit like a needle in a haystack hunt…. and most doctors dont even want to know. It took 19 years which is crazy…
      I dont have antibodies so it would not have been picked up in standard tests even if they did them – which they dont. This is what makes my case more ‘interesting’ although I am no further on in treatment yet…..
      I had a positive DNA PCR test showing its still active but negative antibodies mean that my immune system for some reason is just not responding. I paid for the test privately and then had repeated on the Nhs.
      Let me know how you get on
      Carly xx

  8. Your writing style is great and when you spoke of your teen years leading up to the point when you fell ill, I thought that it was the beginning of a novel. I think that you can turn your story into a thoughtful compassionate novel with a few minor changes such as giving the characters names and I encourage you to do so.. Shell of the book,”Recovering Autism, ADHD, & Special Needs.”

    • HI, Thank You. I am currently working on a guide Ebook to help others – which will have snippets of my story. But actually after that I am very excited to start work on my health (memoir style) story as a proper book. I guess I am still waiting to see ‘how it pans out’ a little more but am looking forward to starting the process when I can and will be looking for as many tips/support on publishing as possible.
      Carly x

  9. Wonderful piece, Carly. Those eight top tips definitely capture the best attitude in a nutshell. It can certainly take time to realise them, though!

    It must have felt good to finally know what was causing you to feel like you did. Doesn’t necessarily give all the answers but, like you say, it certainly takes away that self-guilt which so many of us have for not becoming well.

    I remember the exact day I became ill too – 21/12/95 – just 10 days before you!

    I look forward to the E-book. I imagine it will be helpful to so many people.

    Andy

    • Thanks Andy. Wow how strange the dates are so close. Yes, it helps it so many ways although obviously the best thing ever would be to finally feel well – as you know. Hope you are doing ok – ish. Take Care Carly x

  10. Mine was ultimately triggered by a flu vaccine. For some intuitive reason I did NOT want to get it that year, but being that I had had swine flu several years earlier, the doctors scared me into getting it every year. I had an allergic reaction and thus began the spiral of pain and physical turmoil I’ve been slowly digging myself out of for the past year. Do you think you’ll get better and be able to rid your body of this eventually? Had you seen an alternative/functional medicine doc who can help? Best wishes and lots of luck!!

    • HI Casey,
      How annoying for you. Yes I avoid vaccinations now but it is a tough choice as obviously they are beneficial for some things. I guess its individual as to whether the body can cope.
      Yes I’ve seen many functional doctors and believe Im doing all I can. I obviously don’t know for sure but all I can do is believe that yes I can recover – even if that is not to 100% I don’t mind. Good luck and thanks for connecting x

  11. omg! I have Hashimotos also and had parvo virus in college. I was super sick and turned purple everywhere. Where can I find research connecting parvo and Hashimotos? Thank you for this article!

    • Hi Nicci,
      Interesting link isn’t it. I just googled and came up with a lot of stuff. I think there is a ‘perfect storm’ which occurs with autoimmunity but this is definitely a major factor for many of us it seems. If only I knew back then. lol. x

  12. One of the best blog posts I’ve read for a long time Carly. Heartfelt, honest and….honestly? Right the way through I just wanted to give you a huge hug.

    Genuinely can relate to almost every word you say.

    Keep going….

    Emma x

  13. Hi a friends just sent me a link to your blog as we are on a very simular journey, I was diagnosed with ME at 14 triggered by a flu like illness, then a viral menigitis at 17 (now suspected as lyme disease triggered) I also have autoimmune thyriod and as of last you a unusal autoimmune pancreas blood sugar problem, no one knows what type of diabetes it is) since 2008 I been having treatment for Lyme disease, it helped at first but now it’s just holding it at bay, I’m still mostly housebound, herbal medicine has been the most help to me. Good luch with you healing journey Clare

    • Hi Clare,
      Thanks for the message. It does sound a similar journey and Lyme is coming out as a main player for lots of people at the moment. Who do you see for treatment for it? Sorry it hasn’t helped more. Really hope you improve further. I will keep updating the blog with progress and share anything which may help others.

      Yes I am in Kent – where are you?

      Best wishes
      Carly xx

  14. Thank for reposting this Carly. I have a 10 days headstart on you, having become ill on the 21 December 1995. Twenty years is a long time, isn’t it?

    I hope all the ME Awareness Days eventually start making a difference. Attitudes seem to have changed little since 1995 although there is more understanding outside of traditional healthcare if people are lucky enough to be able to afford it.

    Enjoy the sun!

    Andy X

    • Hi Andy – such a long time I know. Sorry you are having a rough time at the moment. At least now we are both getting some more clues but tis crazy to think of how it could take so long I know.

      I actually have noticed a shift in opinions within the Nhs of late – and come across some very interested and really apologetic and compassionate doctors who know they could do so much more – if the system allowed it. Maybe one day it will change. Good luck in your own journey. x

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