How to be a Chronically Ill Creative #4

First off, I want to start off by saying, it can be hard to compare our struggles to others, this is something I have personally struggled with, feeling like I have no right to complain or express hardships as someone will always have it worse off, or a 'worse' condition (we should not be comparing, that's just strange) or a harder deck of cards in life and this means we can shrug our own off as not as 'important', especially in the society we live in today - we don't want to seem like we are being ignorant to what's going on and often feel like we don't have the right to complain, especially as there is horrible things happening in our world. And whilst yes, we need to be grateful for what we do have and that is extremely important and vital - it doesn't mean we ignore or bat off our own needs and experiences, this does not help anyone, it just bottles it up and pushes all your feelings down - which in the epidemic of mental health we are facing, is the opposite of what we need to be doing. Your struggles are still valid, you are allowed to feel all the feelings and this is a safe space. 

But just a disclaimer - all of the things I talk about are specific to myself, my own thoughts and my own experiences. Others may have a completely different experience to me, some might have incredibly positive experiences or others simply might not understand or agree with what I talk about and I'm learning that that is okay! So please do not take what I say as gospel or in anyway the law or a rulebook of how to have a chronic illness (despite what the title suggests) - chronic illnesses, disabilities, mental health and physical illness are so uniquely individual and who are we to tell someone that what they experience is or isn't the right way to go through something - the most important thing, is to have understanding and empathy. The world is already full of such discourse and people arguing - let's not do the game of 'who has it worse'. As Miranda Hart quotes from grief expert David Kessler in her autobiography 'I haven't been entirely honest with you' (review coming soon!) when asking herself if she has the right to grieve her diagnosis of Lyme's Disease, she says that he says (rhyme) 'What each person is going through is the worst thing that they have been through' and she ends it with 'We all have the right to grieve' 

I have always been the 'sick' child...the child in and out of hospitals, the one with the allergies or problems and the child that my parents constantly had to watch but, eventually, I grew out of the numerous allergies and issues and everything was going fine...until I moved to a new high school and went into second year...yikes - and it all went down hill from there. Or at least, it didn't become a big thing I was super aware of or affected me too much until I started that new high school.

So...I have (medically that I know of) Celiac (or Coeliac) Disease, Anxiety and IBS. 

There I said it! It's out in the open! I can't take it back! The words have digitally left my mouth and are free to be misconstrued and interpreted however they will be! 

Apparently, the Celiac gene can be triggered by emotional or physical trauma, underlying GI issues or just multiple other factors that you can't really ever know when or how it had been triggered - and I will never know how long my gene had been active for, if I'd always had it or if it really was the moving away and to a new high school that finally did it and the anxiety amplified the symptoms but god knows starting a brand new high school and going into second year was a recipe for a dormant gene to become active. And that was the catalyst for the years to follow.

Here, I have made a diagram to make things simpler;

But yes - these things have severely impacted and controlled my life since I was around 13 (ish) and still continue to this day. Now, I won't go into the deep dark depths of the emotional and physical impact of dealing with this as that's reserved for therapy sessions and poems (gotta keep some trauma in the pot to fuel the creativity!) but I do want to focus more on my experiences in the creative/normal job field and trying to exist in this society as a person who shows up when sometimes all I desperately need to do is show down (not like the cowboys) and most importantly, what I am so so slowly realising and trying to do - advocate and accommodate for myself. 

The point of this blog isn't to moan about what cards I've been dealt in life, as Miranda mentions in her book ''safety grows with increased acceptance'' I am now at a point in my life where I am trying (emphasis on the trying) to accept my conditions and by accepting them, I can slowly shed the skin of fear, shame and silence that has built around me for so very long. 

First off, I have already mentioned it twice but I do need to give credit to Miranda Hart's 'I haven't been entirely honest with you' . This autobiography has given way to me finally giving myself permission to show up as I am, illnesses and all. (not that I have accomplished it yet, but it has certainly sown a seed) she is so honest in her book, not shying away from anything - I have definitely fell victim to the ''keep calm and carry on'' (Miranda's phrase not mine) where we all pretend we aren't all exhausted from keeping up the facade and switching the multiple masks we show each other, but by keeping all this bottled up, it does nothing for our nervous systems so we get more anxious and nervous, which then hurts us even more and then we try to cover that up and it is a never ending cycle. Miranda goes into so much detail and explains much better than me so definitely give her book a read. It's the best thing you'll do!

A massive point of her book is productivity and the rat race we all partake in, all trying to climb to the top and make out alive. The more I read of her book, the more I understand how the world is pushing us so much and to do so much when we are quite literally not built for the speed we are being led to believe is 'the best version of ourselves' - and this only gets harder when you have barriers like chronic illnesses, disabilities etc etc - even able bodied people cannot sustain the pace we're being set, so how are those with barriers ever meant to keep up in a world that's already not set for them? No wonder everyone is so tired. 

Now, don't get me wrong - I am still deshedding the notion that how much you work determines how 'serious' you are and trying to separate success from determining my worth and the need to be seen as 'productive', especially in the creative industry where success is unfortunately a huge part in our society as to how you are treated and seen and creates the hierarchy of status - of course we will all want to strive towards it, no one wants to feel like they don't belong. 

I am not sitting here saying I am fixed and I no longer care how productive I am, that would be a huge lie, all I am trying to do is find my own pace without society's judgemental voice telling me how much I should be achieving. Finally trying to listen to my own body, my own needs and start to repair the relationship I have with myself, as a person who has pushed and pushed to go at everyone else's pace when my body quite literally, cannot function the same way.

I think one of the huge things I want to do with this post is to let others who have chronic illnesses or anything that they feel is stopping them from doing things know that they aren't alone. 

For a really long time I felt I knew my chronic illnesses would impact my creative career, even when studying, there was always a voice in my head telling me 'yes, but how will you ever do this as a job' but still I continued on.

It's a very stressful thing for the body in itself, actors are athletes and it's difficult for even the fittest of person, with the long hours, the travelling, the instability and for me, every rehearsal, every show, every early morning or long commute was an incredibly stressful event, I was exhausted from just trying to get to the room, and that left no energy for the actual 'in the room' part. The getting up hours before to manage symptoms, taking all of the medication to manage said symptoms and the utter fear and anxiety when I eventually had to leave and still didn't feel well. 

 Acting was no longer fun for me, it was associated with stress and fear and a thing I was forcing myself to do but at the same time, avoiding anything that was too much, although the mental battle was tough, it was the path I had chosen, I had chosen my degree in this, it's what I should be doing! Looking around me and at my peers doing it caused a lot of 'Well, if they can do it, so should I' which quickly turned into burnout, exhaustion and feeling even more unwell which then turned into 'Why can't I do the same as everyone else! Why can't I just get on the stupid bus, or do that really far away short film! etc etc' I started avoiding auditions, opportunities and things that everyone else was jumping at - due to the fear and reality of being unwell.

(not to mention the actual logistics of being a Celiac, not being able to eat gluten and travelling! I tell you, the anxiety is definitely, in my opinion, the worst of the three!)

I don't want to tell myself 'I told you so!' I'm so grateful for the path I've chosen and I wouldn't be doing all this rediscovering and learning right now if I had chosen an easier path, and I wouldn't be where I am now - finally slowing down (well, trying to) and I have done so many things I didn't think possible, every time I thought I couldn't do something - I overcame it. Which, for anyone who has anxiety knows - the fear comes from the unknown, but every time you do something new that you didn't think you can do, you are slowly building up a little well of things your brain finds a little less scary than before - which is absolutely vital in trying to overcome it, it's so uncomfortable, but it's how you slowly move past it (if 16 year old me who was too scared to leave the house could see the things I've done since, she would have never have thought it possible!) but I must emphasise, healing is no linear route - I still struggle everyday, the anxiety is still very much there and the physical symptoms for my chronic illnesses are still the leaders in my life but the best thing I've learned (thank you therapy!) is that no matter what, you have to be kind to yourself, give yourself some grace and you have to hold your own hand and tell yourself it's okay, no matter the outcome - even if doesn't work out and you need to go back home, you haven't failed, you tried and that is good enough. 

I often find it helpful to think of myself as a friend or a younger version of myself. I would never berate my friend or my child self for not being able to go somewhere, I would ask them if they were okay and if there was anything I could do to make them more comfortable. This whole 'pushing on' nonsense does absolutely nothing for us and just reinforces to your body that it should be stressed and anxious. I think looking at your body like a person that is just trying to look out for you and doesn't know the difference between being chased by a lion and going into work, helps create a lot more empathy for our bodies and allows you to see it from a different perspective. Trust me, I know what it's like to have zero trust in your body (still working on it!) especially when chronic illnesses feel so temperamental and unstable - it's a feeling of betrayal, like your body doesn't work how it's supposed to and that is so difficult to grapple with. But, a little love and care can go a long way, and it's up to you to try and show your body that not everything needs to be dealt with as though we are fighting a zombie apocalypse (not yet anyway!) A little bit of exposure therapy is exactly how I managed to get out of the worst of it, everyday do something you're a little bit scared of, and no matter if you succeed or not, in a few months, or 10 years in my case - you'll look back and be amazed at what you got through. 

But I think the worst thing out of all of this - was that I felt very alone in it. I didn't know anybody else who struggled in this way - who wanted to be creative whilst navigating chronic illness, everybody around me seemed perfectly fine with everything I desperately struggled with (although I’m sure that’s not true, we all wear masks!), even a simple 9am rehearsal that required me to get on a bus was a nightmare. I remember googling one time 'How to be an Actor with Celiac Disease' or 'Actors with IBS' and nothing much came up and it reinforced this idea that yeah, probably because it's incredibly hard to be one. (This could also be due to the stigma, shame and embarrassment that comes along with chronic conditions, but hey, talking about it lessens the stigma and stereotype! (what I'm telling myself right now whilst airing out my deepest anxieties) 

The life of an actor is one that is unstable, full of travelling and early mornings and flying by the seat of your pants, it's touring a show for 6 months all around the UK, travelling by buses and sharing a car with 6 people and staying in hostels with shared bathrooms (all of that would be my own personal hell) it's going to last minute auditions in London and taking the night train at 3am to get there for 9am (another absolute worst fear) It's...hell yeah! We're all sleep deprived but we're having the time of our lives! 

So...how do I do it then? How do I do it when there is no flying by the seat of my pants? It's having to know exactly where I'm going and how long it will take to get there, it's fear and dread and has my medication kicked in enough? What if I feel really unwell travelling? How far is one distance from another? How many bathrooms are there along the way? Are there microwaves in the place we're staying and toilets on the trains?

How am I going to manage my symptoms? Can I trust my body? 

It's feeling like a burden, or a diva, or any of the other ridiculous labels people get for accommodating and advocating for themselves.

It's not asking for help.

It's not knowing how to ask for help.

Or what to ask for help with.

It's feeling like no one will understand.

It's pushing and pushing your body to keep up.

It's not being able to find a single thing to eat in any of the shops you go into, it's eating haribos in a hotel room for dinner because you can't eat out anywhere and there's no supermarkets open (true story)  

So what do you do? 

Well my love, I do not have the answers nor can I tell you which steps to take, because yes, of course you shouldn't let your chronic illness define what you can and can't do but it's also a very real situation of having to manage it and it can be incredibly confusing and disheartening but...I think if I had been able to find one person's story and read their struggle with this situation, I think I would've felt a little less alone, because I am certain there is many, many people out there facing the same struggles as me. So, if this is you, I hope me writing about my challenges has helped you feel a bit more understood, I see you! You are capable of much more than you think and we're in this together!

After this period of realisation, I took on less and less, stopped going to as many things and really tried to look inward at what genuinely brought me joy - during this, I picked up my paint more, learned crochet, did all of the crafty things I had loved when I was younger and started to try to reconnect with my body (and started therapy which also helps!) I realised that for someone who was so ruled by how their body felt - I actually did not take the time to really listen to what it really needed, I was so focused on trying to keep up with everyone that I had become (and probably have been since my issues started) so distant from my own body that I had no idea how stressed out it was. (which definitely causes symptoms to be worse! The gut-brain relationship is so complex and it's crazy how much stress and anxiety can influence chronic conditions) 

This also goes for anyone - not just those with chronic illnesses, for we all ignore what our body needs all the time, for me in particular - aside from the chronic illness part, there was so much I was forcing myself to do that I didn't actually like and caused a lot of stress for me mentally and physically, our bodies remember everything! But still we power on in the name of keeping up or due to the FOMO.

 This is a major point in Miranda's book, she talks about how we have forgotten what it's like to truly gather;

 ''Yet I believe so many people hold or attend social events from that hidden, masked place of needing to be approved. I've noticed people saying they 'should' attend because it would be rude not to, or feeling they needed to be seen there, or were rushing, knowing it was one too many things in the diary, but on the make-up and fake smiles would go to brave the night out. Because, you know, 'we should, shouldn't we?' No, we shouldn't, I say. Not like that. When we gather for a reason, we can love and be of service, and we're excited to be there. How many times have you been polite and kind just to be polite and kind?...We abandon our needs as well as that of our friends by turning up dishonourably. I truly believe that if we knew someone was coming to meet us in those circumstances, we would be deeply offended"

This really struck a chord with me, of course sometimes anxiety can play a big part in this, even if it's something we really want to do, which is they key thing - if you want to do it but anxiety is getting the best of you, you should still try but it's about listening to that gut feeling (which is hard, I know) about whether you actually want to or not, that is a big thing I have been trying to do - telling the difference between anxiety telling me I don't want to go and a genuine gut instinct of I don't want to go. 

(I am aware that it isn't so black and white, there are grey areas such as important events, weddings, big meetings etc that we do kinda have to attend, but I think it's more so relating to smaller scale events such as nights out, networking etc) 

So okay, great, I need to heal the relationship I had with my body and start listening to what it wants to do and then try to accommodate myself...but it still feels so hard. 

This is the stage I am at just now, but I think one of the massive obstacles is the fear, shame and asking for help that comes with trying to take care of yourself and drop the mask of 'I'm fine, everything's fine' Nobody wants to seem a bother, or a burden. Which is incredibly prevalent in the working industry (creative or otherwise) but especially when acting. Making requests or accommodations can feel like you're asking for the whole world, like you may be branded difficult to work with if you ask for things or someone who's able bodied and hasn't asked for any accommodations will get the job over you because it's just easier, and whether that is true or not (probably both) it is still a heavy mindset that keeps people from asking for help. 

I can remember a lecturer once telling our class ''Even if you're sick whilst performing! You will be sick in a bucket off stage and then get back on there!' So if you're chronically ill, this can definitely shun you into never asking for help. Why do we neglect our bodies so much? I don't believe in suffering for your art, why do we need to suffer? What's the point? Nothing is more important than our health, because without it, we can't do any of  the 'suffering for your art' nonsense. I think that that is a very able-bodied person's claim, someone who isn't constantly unwell and doesn't know what it's like to truly suffer for your art. 

Everything is important until you're sick. And that is a mantra I will be taking with me throughout my life. 

But it is incredibly vulnerable to share these things, it has taken me over 10 years to get to the point now where I don't hold so much shame and embarrassment about my chronic illnesses, mostly because I am just SO TIRED of acting like everyone else, my body cannot handle it anymore and my god it is telling me so (peep the hair loss, chronic fatigue and greys from stress, not including the overarching symptoms of chronic illness that caused all of the stress!)

 I have been stuck in a flight or fight mode for over 10 years now, and my body has had enough. But this is mostly because I didn't know how to ask for help, I didn't know what I needed, I also thought people wouldn't take me seriously because it's not a 'worse' condition - not to mention it's not the most palatable of 'conditions' (people don't really like to hear about tummy issues!) which hosts a lot of shame and embarrassment, not to mention it takes a hit of your self-esteem (in therapy I discovered a lot of the way I felt about myself has to do with my conditions and how I feel that impacts my self esteem!) 

If there's one thing I'm proud of, is that I make sure that people feel comfortable talking to me about that stuff, there is no TMI here my friends! I know what it feels like to feel a lot of embarrassment and shame over your body but hiding it only makes you feel more alone, and if you can't talk to your friends about it, you need better friends! Some of the closest moments and defining moments of creating a friendship with someone has been by bonding over our symptoms - I can't tell you how much making a joke out of it with people who love you can make you feel so much more positive about it, it makes it feel lighter and not as serious as it feels when you're alone in your room, thinking about everything you can't do. There are so many people out there who share the same anxieties, worries and shame as you, go out, find them and have a laugh about it! I promise it helps. 

I saw an interview once that said Christopher Nolan doesn't like when his actors go to the bathroom, but understands they have to, famously saying he goes at 11am and 6pm. He would HATE to see me coming, that's for sure. But he has an incredible privilege in doing that, it is such a 'normal' person thing to say and do and I would really love if we got rid of this 'actors are robots' nonsense, the days will keep on spinning, your set will keep on going, there is quite literally no rush, it is a made up human concept. 

We are so concerned with AI and the incoming of robots who are going to take over our jobs (and rightfully so and don't even get me started on that topic) we have ignored the fact that we are being forced to perform as though we were the robots. 

The worst of it is it just furthers pushes those with needs back into the corner, if you aren't able to uphold these 'laws' set out by able-bodied humans, 'do this at that time, do this at this time, don't do this, do that, speak to them, work these hours, don't say this etc etc etc etc' you are somehow not as hard working or passionate because you don't suffer for your art the way they say you should suffer for your art? LET PEOPLE PEE goddamn it! 

We are humans and I think the tech billionaires and all the other weirdos out there who have convinced themselves that their machines are better than us have forgotten the beauty of being human. 

Being human is being imperfect, making mistakes, taking our time, learning, growing, connection, relationships and being incredibly complex and flawed. 

But that is how it's meant to be. 

We do not need perfection, we do not need machines to tell us how to feel, humans are not problems that need to be fixed. 

It is no wonder that auto immune and chronic conditions are becoming increasingly higher (80% of all auto-immune/chronic conditions are female according to this study "Eighty percent of all individuals affected by autoimmune disorders tend to be women due to variation within the sex chromosomes and hormonal changes", which is a whole other topic), our body is literally SCREAMING at us to slow down, to eat better, to ease chronic stress and anxiety and overall - stop pushing ourselves! When we don't, the body reacts in the only way it knows how - by giving us physical and mental symptoms, let's stop batting off GI issues, chronic headaches and fatigue, the depression, the sadness - you could save yourself developing an auto-immune or chronic condition, because once you do, it's life long. 

Oh, and also look at your diet - I've recently been getting into bettering my own and it is so eye opening how much we are not feeding our body the right stuff, what you eat truly does affect how you feel. It's not a hoax folks! 

Another point Miranda made in her book regarding rest which I have taken with me is the fact that humans have forgotten that we are animals, but we are the only animals that do not take care of our needs when we need do, we will disregard sleep as a mere chore, we will not rest when we need to, we will not eat or drink when the feeling strikes us and we will quite literally think of our bodies as a problem that needs to be fixed - we don't work fast enough, or hard enough, or we can't work for long enough or serve enough people or create more and more junk that pollutes our seas and oceans. 

Miranda says "...If I could very carefully watch an animal, I would say that all they are doing is regulating themselves, getting comfortable and meeting their needs. Always taking the right action...little peggy" (her dog) "was constantly adjusting her position to get as comfortable as possible. When she was thirsty, she drank. When she wanted to go outside she would tell me. After she ate, she rested...Humans don't remotely take such good care of themselves in the quest 'to do'...my dog doesn't worry about how worthy she is or judge herself based on how well she is doing or being perceived; she just knows she is a beautiful, one-off, glorious creature. It is her solemn duty to look after herself" 

"It is her solemn duty to look after herself" 

That's what it boils down to, we are simply here to look after ourselves, have fun and connect with one another until we die. That is it.