What It’s Like Living With An Autoimmune Disease

Hope stone on grass

‘The trouble with us’, says a friend who used to edit a Sunday newspaper and is now retraining as a chef, ‘is that we used to be somebody’. Did we? Or perhaps I should say ‘Did I’? Because said friend is now already officially ‘somebody’ again, a busy private chef, restaurant critic and food editor. I, on the other hand, find myself defined by something else entirely unexpected and unwelcome (though for the record I’m not convinced that editing fashion magazines, writing columns and sitting on uncomfortable chairs at fashion shows ever really qualified as anything meaningful). Almost three years ago I was diagnosed with an extremely rare autoimmune disease – Takayasu’s Arteritis, which attacks the aorta.

I’m not one in a million – I’m two in a million, which I suppose is a peculiar distinction in and of itself. The disease can in short begin to block your aorta and thus the blood flow to various essential parts of your body, like, say your brain, your eyes, your legs or your stomach (it’s nickname is ‘the pulseless disease’). Symptoms include:, pain, loss of pulses, (one of my legs currently only has a 20 percent blood flow) mouth ulcers, sore throats, night sweats. I could go on, because there’s worse, but frankly why bother? The point is that I got sick, I’m still sick (in fact the disease has progressed) and the last three years have been what Americans would call ‘a journey’, and what I would categorise as ‘a total pain in the arse’, forcing me to re-evaluate my life, work, my family, my relationships and friendships and last but not least, the medical profession.

I’m not asking for sympathy – I’ve witnessed so many people suffering so much more than me during my horribly frequent visits to hospital. I’ve been lucky too. I’ve seen the best (and of course the worst) of the NHS and I’ve had, in the main, doctors who’ve been prepared to spend time and trouble on my case. But have I learned some stuff along the way that I’d like to impart? Well, how long have you got…?

Trust your instincts

If you think you are unwell, and by this I don’t mean, you feel a bit off-colour, a bit fluey or a bit ‘down’, I mean you have felt persistently and consistently ‘off’ for months, then you know your body better than anyone else. Go and see a doctor. Have them check your bloods. Nothing doing? Persist. Ask to see someone else. Change your care (it’s within your rights to have a second opinion). In 2013 or thereabouts I was tested for Lupus by an adventurous endocrinologist. It wasn’t the right diagnosis, but that’s how long ago I knew I was unwell. My diagnosis came in 2015, after my local GP had mistakenly begun treating me for Shingles and in my misery (my disease first manifested as searing constant upper back pain) I went to a private health care GP and begged for help (of which more later).

Being properly unwell is life changing

It seems obvious, but it’s not. I spent at least a year post-diagnosis in denial, assuming the whole thing was happening to someone else. As a result, I failed to look after myself properly – and by this I mean I tried to work, live, love and generally operate as I had done when I was well. This was a very bad idea, it created expectations in others which I couldn’t possibly fulfil and probably led to some of the more unpleasant twists and turns the illness has taken. So, accept the diagnosis but don’t give in to it.

Expect Nothing and Everything

Here I’m mostly talking about your relationships. People will never stop surprising you. Those who you have held close and dear and always thought you could count on (well one or two of them) will walk away. Particularly those for whom you have been present during their own moments of severe grief and serious illness. No matter. Because in their place will be people you thought were passing acquaintances, work colleagues, or frankly people who didn’t like you or care about you that much. They will show up physically, spiritually or professionally and HELP. This is huge.

At work nobody can hear you scream

Or rather nobody wants to hear or see you scream. Unless you are really lucky your bosses will be asses. The bottom line is that mostly nobody wants to deal with a sick person who is not going to add to productivity. But you have rights.  Make sure you know them before you go in and tell them your diagnosis and your requirements for sick leave. In my case I hadn’t been with my company long enough to hold sway. They began the redundancy process over the telephone – we had a female CEO – (yes #hertoo) whilst I was on sick leave.

People who suggest green juicing are quantifiable idiots

I’m not talking about changing your diet –, that can be good, but really, lady at the dinner table whom I’ve just met, you think kale is going to help me through the nausea inducing, violent sledgehammer ripping through my body and destroying everything in its path that is chemotherapy? GO AWAY.

The medical profession doesn’t always know what it’s doing, but largely it knows more than you

As a type A control freak I’m the worst patient imaginable and as my consultants will attest, I always have a new theory or a new idea gained via our best medical friend and a doctor’s worst medical nightmare: the internet. Do your research and keep doing your research. Things change all the time. But if a doctor tells you to do something, then, in my experience, with notable exceptions at least give it a go.

Take the damned drugs, but within reason

In my case the only thing that really works are high doses of corticosteroids or steroids. Unfortunately for me, and everyone around me, I don’t do well on steroids. By which I mean I go stark stir, foot stomping, street shouting, internet shopping, insomniac crazy on any more than 25mgs. I know this now that I’ve moved house to the wrong area, bought a lot of stuff I didn’t need and got into some pretty pointless arguments with utility companies. Know your drugs and their side-effects. This can save you a lot of angst and possibly money.

Love something – anything

This isn’t one of those ‘illness made me see the best in life’ points because frankly I detest being unwell with the sort of seething rage I normally reserve for male drivers and the monarchy, but you need a focus. So whether it’s a dog, a cat, a man, a woman, your children, a hobby, you need to ‘feel the love’. And by the way, I don’t think the odd fag, chocolate digestive or drink hurts either.

You can do anything when you really have to

I’m needle phobic. But until last week I injected myself weekly with 130mgs of a so called ‘wonder drug’ (so called because in my case it didn’t work). And last year I spent 20 hours hooked up to a chemo dispenser via a needle in my arm. By this measure I could probably summit K2, handle a Boa Constrictor or eat a yoghurt without vomiting. Who knew?

Start a revolution from your bed

Invalid status can be freeing. I started a company – Roadscents (available right here with thanks to the lovely Gill). It took me forever and I’m still making excuses as to why it’s not perfect. But I did it.

Walk don’t run

Well, run if you can. I’ve gone from running three miles a day to limping for half a mile (the disease has blocked the blood flow to my right leg). But still… get out there and walk. And lift light weights. I do yoga too (on my own in my bedroom – these days I couldn’t do a whole class – in my previous life I co-founded Triyoga, Europe’s largest yoga centre). The point is to move, and most importantly, be out there, in nature.

Be your own best advocate

The old adage never has more relevance than when you are properly unwell. Be seen, be heard. The problem is when you are ill it’s the last thing you feel like doing. Some serious mistakes have been made during my care and on my watch. I’ve  even had the benefit of the occasional visit to ‘the other side’ – private healthcare – where they have more time to listen (but which incidentally tends not to cover chronic illnesses like mine). And yet, I’m still not better, I’m worse. A recent visit to the emergency room saw them trying to send me home with a supposed back injury and pack of painkillers. After a Warp Fact 20 meltdown, a scan was agreed to (and the most serious problem yet discovered). The squeaky wheel eventually gets the oil.

Two heads are better than one

Until recently I’ve fought against agreeing to allow my partner to accompany me to my doctor and hospital appointments. The theory being that I want a lover not a carer. But when you are in ‘the room’ for the cursory five minutes you’ll get with most consultants, it’s easy to forget what’s been said (keep a list of questions to ask and try to take notes). It helps to have a witness. Take someone – a friend, a relative. If someone offers they mean it. Take them up on it.

Ask for help

I’m really bad at this one, but seriously being properly unwell is a properly lonely experience. ‘If you had cancer there’d be a support group’ said my local GP after I asked about counselling, ‘but because you’ve got this, I don’t know what to tell you. And anyway aren’t you seeing enough doctors?’. After I’d told him what I thought (and these days when don’t I?) I registered with another GP, got in touch with two other women who are in one way or another dealing with some pretty serious shit in their lives and got them over for a cuppa. Now we check in daily. I feel heard by others who are also going through some life changing stuff..

Meditate on how annoying people are who suggest you meditate…

Just five minutes daily of sitting quietly and trying to empty your mind. That’s all I’m saying.

Vanity matters

Well of course I would say this, I’m a former magazine and beauty editor. But really. I’ve spent two years wandering around in Uggs, jeans and parkas (yes, even during the summer months) feeling sorry for myself and worrying about my steroid ‘Pumpkin face’ (one of the very worst side effects of the drugs in my opinion). A recent visit to my 92 year old, immaculately turned out grandmother changed my thinking. ‘Darling’ she said, as I was leaving, ‘you do look better with a tiny bit of makeup on’. A light bulb flickered somewhere deep within my subconscious. ‘Mmm’ I said, ‘I think I’ve let myself go a bit’. My granny straightened her gold rimmed glasses onto the rim of her nose and patted her recently permed hair. ‘We mustn’t let the side down darling must we’ she said. And no readers, we mustn’t.


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  • Ann Farr

    Such a brilliant article. Thank you so much for writing it. What a PITA you are battling and I so agree about not (or trying not to) giving in.

  • http://www.victoriahealth.com/ Victoria Health

    Thank you Ann. The more people I talk to who are battling a chronic illness like mine, the more I understand the comment ‘take it one day at a time’. Be well. Tina x

  • http://www.victoriahealth.com/ Victoria Health

    Hello Iris, thank you for your comments – we are going through very similar things and I sympathise entirely. Yes, I too am on Methotrexate in combination with my steroids. The combo enables me to take a lower steroid dose. Unfortunately, I’ve found that steroids at some level are really all that works- having tried almost everything else. I absolutely hate the side effects of steroids and I take all sorts of things to counteract them. I’m also on an alternative drug infusion (after the chemo and the Tocilizumab injections failed to work) which is not yet approved by NICE and I’m waiting to see whether or not my local authority will provide funding. I’m wishing you very much luck with your recovery and sending you my best wishes. TG x

  • http://www.victoriahealth.com/ Victoria Health

    Hello Michele – I’m so glad to hear that you like me have found a way of making sense of our mutually debilitating type of disease (even though frankly you sound a lot calmer than me – for which congrats). The more I speak to people suffering from any form of chronic, long term illness, the more I realise that feeling as though we are helping others in some small way can be really uplifting – which is why the fact that you are a reiki master (send some my way – reiki rocks!) and a blogger makes total sense. I’m sending you my very best and fingers crossed that you can begin your new drug soon. It’s been suggested to me that I start some sort of forum/site for those of us wanting to share our experiences good and bad – about which perhaps, more soon… oh and on the perfume front can I suggest ilapothecary’s Speak Your Truth Aroma Roller, No 77? – a gift to me from the lovely Gill – it’s working!

  • http://www.victoriahealth.com/ Victoria Health

    Thank you Lyn – I totally agree, we can’t be defined by our illnesses, we must find a way to work with them and through them. As I can see from all of the comments and emails I have received, sharing what we know and feel with others can be empowering. The other point you make so well, is that there really is so little research around these auto-immunes..we’ve got to keep trying and following our instincts (as well as the medical profession’s suggestions!) And… never give up hope – though I can’t say I manage that one every day! x

  • http://www.victoriahealth.com/ Victoria Health

    Thanks Michele – will keep you posted re: the forum! Be well x

  • http://www.victoriahealth.com/ Victoria Health

    Stella, so many thanks for your mail. I didn’t know about the Wahl Protocol (though I have tried the Budwig Protocol, which I found impossible) – but now I feel like I know all about it (well I’ve read the book)! Fascinating and a lot to think about…especially since I am practically vegi and one of the things I hadn’t considered was eating meat as a form of therapy! I’m so impressed that you are following the diet and doing well on it – long may it continue. As for the self-massage, you actually got me thinking that I should go back to my physio who also has healing hands – I definitely benefitted from a weekly visit. There’s something very healing about massage – almost regardless of what ails you. I will definitely be looking up Donna’s work. Wishing you the very best with your treatment and for the future – thank you again for such a great suggestion! x

  • http://www.victoriahealth.com/ Victoria Health

    Hi Sabina
    Wow. You are a power-house. What an inspiring story – your PHD and an arts festival. That is an incredible achievement at any time, never mind when one is so unwell. Congratulations. And your comments are so encouraging – I agree with you on the ‘wanting to be better for yourself’ element. I think there’s an enormous amount of self-blame that goes on – we feel responsible for our illness in some way and that somehow we brought it upon ourselves. That’s a common thread I hear from almost everyone with a chronic disease – it’s something that is hugely overlooked by the medical community (as is pretty much everything to do with well-being and chronic illness!). I feel convinced that at least in part, there’s a key in there to recovery. We need to like/love ourselves enough to want to recover fully – you are so right.
    Thank you so much for your comments. My best to you and your family.
    TG x

  • Nancy

    Great read most of which l agree with, l am primary sjogrens with inflammatory arthritis, no way as serious but have had some horrendous experiences with various medics and prescribed drugs, fortunately, l have had an excellent GP who through the years has always listened to me and tried to see that l see the right consultants.yes, a bit of makeup helps also as my lovely auburn hair became thin and faded from the steroids a good stylist and a smart haircut really improved my wellbeing and the pumpkin face! l lost mine and the 2 stone in weight that went with it by following the 5/2 diet .my career went so l started cleaning peoples houses, a good way to keep reasonably fit and you get paid and the days when you really can’t move for the pain, retire to your couch and pamper yourself, and don’t forget a bit of bloody-mindedness can really help ,count your blessings cos as far as l know this is it now not tomorrow !

  • http://www.victoriahealth.com/ Victoria Health

    Hi Nancy,
    I absolutely love your comments on bloody mindedness and your completely pragmatic approach to your illness. Often we get lost in hospitals, doctors and (speaking only for myself here – upon the odd occasion) a big splodge of self-pity, which as you point out, does no one any good!
    So yes, be thankful for what you have and for every day that you have (tho I find myself more thankful for the good ones than the bad ones – must work on that!).
    Sending you my very best for your recovery.
    Yrs, (re-thinking my haircut)
    TG x