Renu Arora

In the early stages of my illness, I had just come back from doing a play, and I found myself really breathless during the show which I had just put down to being 24 years old and old I guess! So I decided to take some more classes as well as the work that I was doing. Then decided to go and see a friend in Cornwall for a few days and a few of us were walking along the cliff front, and again I found myself really breathless, really quite shattered and by this point I had been getting some other crazy symptoms like various muscle pains and things. I felt about 90 years old and my other friends, some of whom were younger, some were 10 years older and I thought how come I am not able to withstand this level of activity and they can do 5 times as much as me. 

I came back to London and then went to see a GP, had lots of tests and it came back that I was very anaemic, my iron was really low, so I went on iron tablets etc.

I started working in a theatre and quite a responsible job. I was in charge of the figures and the money for about 19 to 20 ushers at that time, so it was quite a responsibility.

My aunty had also just died and that affected me quite a lot. By this point I was doing about 6 shows a week and really, really exhausted. I would have dreadful muscle pains, I also had a series of throat infections, I had pain behind my eyes, dreadful headaches. It got to the point where I just thought you know the iron levels must be getting back to normal but I am not, my symptoms don’t seem to be going, they are actually getting worse.

I would do the shows in the evening and I would fill any spare time that I had with having a social life and doing things and not spending time with myself because I didn’t want to feel the depression and anxiety, and I guess the emotional weight that I had carried with me for such a long time but just didn’t want to accept. So I went to the GP again and I had tests, the iron levels of course had corrected themselves and I told the GP I was having what I would call ‘fits’. I told them about this and the headaches and the pain behind my eyes and he said, ‘you may have a brain tumour’, and I went ‘Oh My God!’ 

With that I went to work that evening and I just thought it is only a matter of time before my manager pulls me in and says what is going on? I thought either I will get fired or I can go and tell them myself what is going on and it is probably better to tell them myself. 

So I went into the office and burst into tears and I think I said something like I cant take this anymore, told my manager what was going on, all that had been happening, and that was my last show. The following day I went to stay with my family for 6 months.

It felt like I had fought my whole life to get into acting this and now I was having to in many admit defeat, because I couldn’t sustain my life, I couldn’t really look after myself.  I guess I just realised, I needed to be in a place where I could rest and not worry about day to day things like cooking and cleaning, washing and running a house.  Of course I don’t have any friends in Wales so it wasn’t like I could push myself and go and see my friends everyday.

I wanted to tell people how things were, especially family friends and people like that many of whom were doctors, that I wasn’t well and this was the situation.  I could imagine them being perhaps sympathetic but my family were like, ‘you are not allowed to do that because a. you have an illness that we don’t understand and that is not possible for an Asian person and b. we cannot show that there is anything wrong in the family.’

Whilst I was in Wales I saw a CBT practitioner who diagnosed me with hyperventilation syndrome, which of course I didn’t realise at the time was just part of the picture, it was just the symptoms rather than the whole picture.  So I came back to London after 6 months with the belief that if I get ill again it is my fault.

Well I interpreted what the CBT practitioner said as, if you develop symptoms again then it is your fault.  Whether he said that or not, I don’t remember but I do know that that was the message I took back with me as I was well enough to come back to London.  Self blame and having a large inner critic has always been quite a big thing, especially in my family, so I had learnt to beat myself up and give myself a hard time, a. because I am a woman, and b. because of the dynamic of my family.

I got a job in a theatre and I started to do a few shows a week again, thinking that I could sustain it and again started to push myself, thinking that I was well enough to do that because I had recovered some level of health at this point.  So I began working and about, I would say 3 months later my symptoms had started to come back.  It was quite a gradual thing so I could feel that creeping up on me.  I was pushing myself consistently in the same way that I was before I became ill, so was unsustainable anyway.

As the symptoms began to get worse I thought I can’t sustain even dong the few shows that I am doing, let alone doing those classes and having a social life and doing other stuff, that just wasn’t possible anymore.

ME had been mentioned to me quite a few times by a locum GP in London, so I thought I need to research this.  I began researching, looking on the net, and I got the magazine Action for ME and I saw an advert for a clinic in London, who had an ME specialist who was a rheumatologist.  So I went to see him, and he gave me the Myhill cocktail which is like an infusion of vitamins and magnesium injections.  I saw him for 3 appointments and at my 3rd appointment, my mum came with me because by this point she was rather worried and she asked him what the prognosis was for something like this and he said, ‘I don’t think you will ever get well, but all you have on your side is the fact that you are young so, I cant really say much more than that.’  How lovely!

I was still working and I was having to take quite a lot of time off and I kept thinking to myself I am not getting paid for the time off because I have not been there long enough, I was obviously panicking about money and rent, bills etc.  So I thought well I need to do something more because there was clearly something wrong but I am not really sure what it is and if it is ME then I need to do something about it.  I need to find somebody that is actually gong to help.

The next thing was finding The Optimum Health Clinic, I found it in another edition of Action for ME.  I was resisting because to admit that psychology had an impact would be to admit that it was my fault, in my mind.  I was carrying around so much guilt anyway that to admit that was to add to the huge amount of guilt I was already carrying around with me.  So, it was virtually impossible for me at that stage to come with a sense of openness that I did later develop.

I was also having a lot of ear infections, I had the first ear infection after coming back from a family holiday to Centre Parcs.  I had 2 holidays within the space of a month, 1 with a friend and 1 with my family and I had come back and within a week I had had this horrendous ear infection, and I have never been in so much pain in my life, I had thrown up 3 times in the space of about 20mins I was in that much pain.  The pressure of the ear infection caused a tiny rupture in my ear drum and that took about 1 month to heal with having regular suction and antibiotics and various treatments from the ENT specialist at the hospital.  That began a series of ear infections, I think in all I had about 25, so I kept having ear infection after ear infection and I began to see a pattern emerging in that every time I went home, when I returned I would have an ear infection, it was so direct, it wouldn’t miss one.  It was unbelievable, but it took quite a long time for me to really make that connection.

I got to the point when I had that session with Alex and I divulged all my family stuff that I just thought I can’t maintain this façade because it was a façade and it was just a layer upon layer of lies I guess, and of course it was unsustainable.  It was a kind of psychological meltdown as it were.  It was as though my whole reality had been pulled from under my feet.  There was a huge shock of oh my goodness the biggest contributing factor to my illness was my past, my upbringing and I guess in many ways the treatment I received as a child.  That was such a big thing, it just felt like this over-whelming sheet of blackness at that point and I guess I went into a complete state of shock and just didn’t know what to do with it.  I had spent the whole of my life trying to run away from it and trying not to be with myself.  I didn’t actually want to be alive while being in the pain that I was in because it was just too intense. 

Asking for help was alien to me!  Initially it felt horrendous, it was so difficult because I have never done that before.  I have tried to be fiercely independent because I didn’t want this façade to be broken as it were, so my way of coping with that was to push and to do everything myself and to not let anybody in really and keep everyone at arms length.

As the days went on I wasn’t suicidal anymore, however I was still in a dark place.  I remember reading The Journey by Brandon Bays and going on her workshop and at that point it took me back to a point in her book where she had literally lost everything in order to pick herself back up again.  I felt like that had happened to me too, I had lost my agent, it just felt like every single aspect of my life was virtually nil, but it kind of felt quite exciting too.  Having the wonderful support that I did was probably the biggest factor.  Learning to be vulnerable and being able to go into my experiences and my past and not being judged for it and that meant I had a sense of holding and support, so that I was able to come through it.

The more that I processed the lighter I felt emotionally and the more my energy came back and it did feel like this tiny flower that was being born.  I felt like I had got in touch with something far more real than anything I had ever experienced, which for me was my soul, my essence, my spirit.  I used to think I was quite spiritual but until that point I probably wasn’t!

Having that feeling of being in my body was a completely new experience, because I hadn’t really ever been there before so it was kind of a process of exploration too of how it feels like to be in this place, but also to be well as the months passed.

I was changing how I related to the world, to people, to friends, to relationships and to myself.  Previously I had taken my career and the religion that I was bought up with to be my identity, which of course going through that journey wasn’t the case at all.  I was relating to the world more so from my authenticity and my truth and my essence, rather than from this façade that wasn’t real at all.

Regarding the ear infections when I had made the connection between seeing my family and having an infection I decided to create some distance and did this an lo and behold no more ear infections.  So it kind of felt so miraculous but for me that solidified my belief that symptoms have a deeper meaning, not just what it going on in your body but it is your mental state, psychology, spirituality etc.  There is something else going on, there is something deeper, so alerting me to read up on that and just be very interested in what symptoms can actually mean and what it means to be fully in our bodies in a spiritual way.

Life is now amazing, I was on holiday last year, I recently went to Findhorn and we were out of the chalet from about 9am until 9pm doing quite physical things and I felt really quite energised and at that point I realised I am well.  It felt quite amazing because it was a wellness that I had never felt before, it wasn’t like I had got to the way I felt 6 years ago, it was a completely different kind of feeling.

Looking back on the journey, a key lesson has been prioritising myself, putting my own needs first, its ok to ask for help, my needs do matter and they need to be honoured. 

I’m now getting back into acting and it feels unbelievably different. I always knew that I wanted to work in that profession, but I approached the acting from a place of ‘if I have a job then I feel important, then I feel that I am significant and if I don’t then I am a failure as a person’, so  now I am doing it because it is part of what I want to do and I love it.  It sounds simple but that is all there is to it.  So I am approaching it from a completely different place, it feels driven by my instincts, my intuition and I guess the whole of my being rather than being very head driven like it was before.

Renu shared her recovery story with members of Secrets to Recovery in April 2008. To find out more, click here.