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  • Writer's pictureMark Caldwell

Behind the Scenes of Perseverance: My Journey with Chronic Illness and a Film Career

Updated: Sep 19, 2023

As I've opened up more and more about my own journey with chronic illness and working as a cinematographer, I've had increasingly more industry people contact me to say that they also struggle with chronic illness while working in the industry. So I wanted to get down, as fully as realistically engaging, my experience to date of chronic illness, living with it and also trying to keep a career going throughout. Or not, at times.


This is intended as a record for anyone else feeling either alone or struggling with their own journey, or those just wanting to try and understand what it is like for those of us living with these challenges. I know how bad it can get and how alone you can feel when you have no idea what is happening. And trying to add on top of that any kind of career is statistically known to be very difficult.


Consequentially, I am editing this down a lot, I've abridged huge sections of my life but it will still be a very long blog for which I'm not apologising. I will do a shorter blog that explains what I've found has helped manage my chronic disease next, for those who just want ideas of what has helped me.


Early Years

I've had unexplained lifelong health issues that defined a lot of my childhood, including missing a lot of schooling. I know now it was an undiagnosed autoimmune disease that would later become life-threatening and life-changing in the form of an invisible disability called Ulcerative Colitis, but not until I was 29.


Prior to that, during my A-levels, then during my degree at UCL, where I first encountered filmmaking, and then my degree at Essex, a pattern in my health emerged; I would push myself over a period of time, as everyone does in these situations, but under this stress my health would eventually collapse into a debilitating illness and pain severe enough to have to take long periods off in order to recover. Doctors either couldn't explain it, while others could treat it but not to a controllable level. However, each time this happened I learned to pace myself better and better – not good enough to prevent the illness but put it off longer and longer.


Crawling over the finish line in 2004 at Essex University, suffering from this pattern for the third time, I had to largely convalesce for a year. I wasn't involved in filmmaking while at Essex, I had to put that on the back burner after UCL but I was starting to apply to film schools. It was mid-2005 before I was back on my feet, still with no real explanation as to why this kept happening but I was learning I had physical and energetic limits that were lower than my peers.


During the more stable periods I was trying to live my life as normally as I could, I often masked my health struggles (this is a good blog about masking), which is something people with chronic illness often do without thinking; it's the fear of opening up to even those closest to us and we do it day after day, month after month with the frustration of not knowing what's actually wrong with us, even when we look relatively normal on the outside in the case of invisible disabilities. Eventually this can lead to significant mental health issues.


Film School

Anyway, I started film school in January 2006. The days were long and I was doing four hours per day of commuting, 5–7 days a week because I didn't have the means to move back to London at that time. It was after about 5 months of this that I started to realise my health was beginning to fail again. This was upsetting to me as I was finally doing something I actually wanted to do, I had hoped enjoying something I was studying would help overcome my health issues but that didn't happen. It's exceptionally frustrating to live with a body that can't keep up with everything you want to do or what other people are managing to do with seemingly no effort. It was on one of those commutes I experienced my first panic attack, it was short but I didn't know anything about them, I shrugged it off. In hindsight, my mental health had already begun to suffer, although I had no idea that was happening at the time.


I learned a lot at film school but by mid-2006 I had to pull back so I could reduce the hours I was doing before my health failed completely again; I pursued other film opportunities that had come about because of being there though; I worked on professional films, film school friends' graduation films, helped out with the early digital cinema kit demonstrations for Arri and Panavision and a whole load of other exciting things. However, I eventually had to back off and slow down further because my health wasn't improving sufficiently. I remember getting back late one night from a Manchester shoot in October 2006 and I was due to be on a train to London at 7am to be on another shoot the next morning, but I was so ill I had to drop out and finally focus on recovery again. The rest of 2006 I took quite slow, saw friends, went to a few gigs, took what work I felt I could but spared my body as much stress as I possible in the hope of better health for 2007. I very narrowly avoided complete health failure that year.


Early 2007 I was taking film jobs but it became clear I needed to be living in London again to help reduce the stress of travelling, and by August I had managed to move back. That helped a lot in terms of what I was doing at the time and by taking regular breaks to just recuperate, I was able to keep working on film jobs. Mainly involving working with crews and the new digital cinema cameras coming through from Panavison and Arri, while gaffering on other jobs.


Unfortunately, taking regular time off to recuperate impacted the rate at which I could progress my career compared to more able-bodied peers. Also I was still heavily masking, which was likely increasing mental health problems without me realising.


Bowel Disease

I managed to juggle all this while gradually increasing the number of filming jobs I was doing until mid-2009 when I was starting to feel unwell again, but it felt different this time; I backed everything off hoping to recover but it didn't happen. I battled with things until 29th November when my symptoms became a lot more serious with blood loss, internal pain, rapid weight loss and much more. I was put onto anti-inflammatories in December with a suspected bowel disease, either Crohn's or Ulcerative Colitis. They helped but not massively. In February 2010 I had a colonoscopy which showed serious problems, however, it wasn't until April that a consultant gave me a formal diagnosis of Ulcerative Colitis. I was quite weak and highly anaemic by that point due to poorly controlled blood loss over the previous 5 months. The consultant gave me a ream of things to immediately take, starting with high doses of prednisone (cortisone steroid), stronger types of an ulcerative colitis specific anti-inflammatory and enough iron tablets to constipate a horse. I remember getting home and taking the massive number of tablets in one go as instructed and passing out in bed for over 8 hours straight. I woke up feeling a ton better than I had in the best part of a year.


Needless to say, I had not worked for months and also unable to leave the toilet for much longer than an hour at most. Sleep was difficult. But I'm abridging this whole sequence, I barely even want to think about it. Plus I was single and living alone in a place with too many stairs for someone so weak and anaemic.


Immunosuppression

The next couple of months saw me begin to recuperate and even start getting out again but the steroid treatment was not a long-term solution, I was gaining weight fast due to them and my skin was a mess. After a few months it was becoming clear that I couldn't get off the steroids without severe symptoms returning so it was decided in September 2010 to start using an immune-suppressing chemotherapeutic medication (chemos), starting with Azathioprine. I was also prepping as cinematographer for a feature film shooting from the end of 2010 to early 2011 and I'd just met my future wife, so life was moving again but the medications were taking their toll even though the disease was no longer life-threatening.


Also, I remember being cinematographer on a film shoot in the south of Spain early 2011 and feeling seriously rotten due to the combo of high-dose steroids and chemos. My mental health was suffering still even though it was not something I understood.


Over the next 6 months, the Azathioprine dose was increased in an effort to get it to work and help me off steroids but it didn't happen, it was just hurting my liver. It was decided to rest my liver then try Mercaptopurine, another similar chemo but after another 6 months of that it was clear it was also hurting my liver with no positive impact on steroid reduction. This is a known problem for a small number of patients.


Consultant Change

It was now early 2012 and I was moved to a different consultant who could work with alternative medications. It was here I first heard about biological medications but they weren't available yet on the NHS. In the meantime she moved me on to Methotrexate, an alternative immunosuppressant chemo. You are warned right from the start you must not try to start a family on this medication, male or female, and my then very patient and supportive girlfriend (now wife) was present for these warnings. Quite the crash course for a relationship less than 2 years old but she had been amazing throughout, an important factor in my recovery.


All through this, I was managing to work as a cinematographer but I needed to be careful, taking breaks to recuperate and choosing the length of projects I worked on carefully but I was able to work. I felt pretty rough physically and mentally, though.


On Methotrexate I did actually start to see improvements in colitis symptoms within a couple of months. I can remember being a cinematographer on a shoot with Ed Skrein (Game of Thrones, Deadpool) while going through some weirdly painful but oddly positive symptoms. As a side note, he was lovely to work with, very talented and deserves every success. But I promised myself not to do the anecdote thing in this blog.


That was the first time I'd really experienced an actual positive change in the bowel disease since the first day of taking a massive dose of prednisone. This led to my first successful attempt to taper off steroids, which took about the next 12 months as you have to go VERY slow after being on them for such a long period.


Briefly Prednisone Free

By mid-2013 I was finally off steroids for the first time, some wobbles and enforced breaks while things stabilised but Methotrexate was keeping the bowel disease under control even if it was far from symptom free. It was about this time I started to work through my diet for anything that might be making symptoms worse, officially doctors say food cannot trigger colitis flares, which is true, but I find that certain foods and drinks destabilise the bowel disease.


Unfortunately in July 2013 I suffered some unexplained health problems and two things were suspected, the first was Methotrexate was causing infection or immune issues. So the decision was taken to take me off it immediately. The other thing suspected was I was experiencing the final form of a full-blown anxiety/panic disorder on top of the physical issues. The consultant referred me to the mental health support section of her bowel disease department but I will leave the mental health issues to a different blog.


I managed to keep the ulcerative colitis stable for around 11 months without any suppression medications and continued to work on short-form filming jobs.


Methotrexate Again

However, by mid-2014 I was suffering repeated flares and struggling to regain control of the disease so the decision was made to put me back on prednisone, which did not have the same strength of effect as the first time due to a steroid resistance build up. I got married to my wonderful wife while trying to manage a flare and steroid use at the same time, my health was not doing super well unfortunately but we got through it, as we had all the previous years.


So in early 2015, two things happened; firstly it was decided for me to try methotrexate again due to a lack of options beyond colon removal surgery, while biologicals were slowly making progress towards approval under the NHS. Secondly, I broke two vertebrae, it's unclear what exactly why but it was suspected that a combination of long-term prednisone use and heavy film equipment was the cause. The vertebrae involved still hurt on a near daily basis to this day, not terrible but it does get more painful with heavy gear; gimbals are not my friend.


The next year was spent getting off steroids again and apart from some occasional short prednisone usage I've been free of them since. I was working on a lot of short-form shoots up until this point, short films, music videos, promos and so on so while all these experiments with my immune system were happening. It highly affected my career, slowing down my ability to build up my credits.


It is very difficult to look after complex health conditions while away from home and your support structures, and filming is usually running on tight budgets so having the facilities and finding the time to keep on top of any health management is often impossible.


The Stable-ish Years

I will truncate 2016–2020 because due to diet management, supplements and being very careful, I managed to get the methotrexate treatment reasonably stable. I also needed folic acid every day except the day I took methotrexate in order to control the feelings of sickness, brain fog, nausea and (ironically) hunger caused by taking this medication. I was losing 36 hours a week to being sick with methotrexate but it was controlling the disease better than anything previously. Weight had become a problem though, the steroids had caused significant weight gain, at 191cm (6' 3") I was 138kg (21.7 stone) and the methotrexate side effects were making it difficult to lose it, although I got some of it off, doctors were still very worried for my health in that regard.


This rumbled along with regular tests, reviews and colonoscopies until 2020, I managed to work choosing things as carefully as I could and being mindful of the 36 hours a week sick with methotrexate. I was managing to do about one feature film a year as well, which was a big improvement for me as my health improved. Plus I had a new agent, I was a member of BAFTA Crew and I was starting to get better commercial offers too. About a decade behind where I should have been but I was progressing despite all the setbacks health-wise. So obviously something had to go catastrophically wrong.


Pandemic & Biologicals

I won't go into the full details of the pandemic, it was bad enough first time around, but due to severe immune suppression I was classed as Clinically Extremely Vulnerable and told to Shield from the world entirely for about the next 2.5 years. Career stopped, agent dropped, consultations went to telephone, the NHS buckled, everything hit the fan and so on.


However, in October 2020, during a telephone consultation the doctor expressed concern that I was still experiencing so many side effects on methotrexate with biological medication getting cheap enough for the NHS to offer it. So she started the process of moving me onto one. It was messy, the pandemic meant everything was harder than it should have been but she persevered with the application. I will be forever grateful to her and the hard work to get everything sorted. We went with Adalimumab because it was the newest useable one at home and by November I had received my first enormous delivery of injectable pens. I stopped Methotrexate a week before taking the first Adalimumab dose, there was no guidance on this but that worked for me fine.


The effect of Adalimumab was noticeable within 36 hours, as symptoms I'd been struggling with for years started to clear up. I'm not totally symptom-free, I still have to be careful but it is much more controllable. There is still immune suppression but better than on any of the chemos. So almost a decade after I first heard about biologicals, I was finally using them. Even if it was during a global pandemic, unvaccinated and under the effects of 2 strong immunosuppressants for the first 6 months.


If I had caught COVID-19 in that time frame, it would likely have been the end for me but I'm extremely grateful the science came through in all respects.


Present Day

So symptoms are reasonably stable, I have no side effects on Adalimumab and I've gotten my weight back down to where it was before bowel disease (83kg/13 stone), which has helped enormously. Definitely not marathon ready but at 43 I'm significantly fitter and healthier than I have been since I was 29, possibly my entire life.


I've lost a huge amount of the last 13 years, especially my 30s, and I'm years behind where I should be career or life thanks to battling this disease, BUT I'm in the best place I've probably been my entire life at this point. A massive thank you goes to my wife, my family and friends for having helped me throughout all of this.


Final Thoughts

The biggest part of living with any chronic illness is what to do with the life you have when you are not unwell, it's difficult for us, but also for those around us too. People will rightly ask me why keep pushing to work in film, such an unstable industry especially right now with all the strikes. But the truth is it actually suits my health; a 9–5 job would not work for me and I would have to take too much time off for an employer to be happy. Freelancing is more flexible, the film industry is full of understanding people, gaps in your CV don't matter, only the credits, and I'm in control of more of my life. The post-pandemic recovery and strikes are currently now my biggest struggles, but I'll get there.


So will you if you are struggling with chronic illness too, no matter how slowly. Just keep going.

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