Being a self employed photographer and having a chronic invisible disease
A few of you might know, but some may not. I have a range of autoimmune diseases. Often called invisible illnesses. Quite often this just means people forget that I could be struggling or don’t believe you. Part and parcel of invisible illness unfortunately.
The humdinger, the one that made me think I was dying. Genuinely, not dramatically. I almost got to the point of acceptance. Now some of you might think, “Oh you get bloated or a tummy ache when you eat gluten, right?” Which is fair, lots of people are uneducated and the fad of the gluten free diet has cultured this way of thinking. My celiac was the ‘worst case’ my doctor had ever seen, she had an ambulance waiting for me when she told me about it. She couldn’t understand how I wasn’t in hospital already. At that point I was severely malnourished, severely anaemic (hence why I should have been hospitalised, blood transfusion kinda low) and had an extraordinarily low blood pressure and heart rate.
It took me roughly 4 years to just START to feel better (on average it takes a celiac person to feel better after 3-4 weeks after diagnosis, not years, this was my severity). It’s taken me nearly 8 years to finally feel more like myself. It caused some serious damage and sometimes my body just isn’t having any of it. A simple crumb, yes really, no it’s not an exaggeration, a simple crumb can send my body into kill mode.
Celiac disease means your immune system kills off all the villi in my stomach and intestinal tract, the tiny fingers that break down your food for you. You need food, you need nutrients, not just for weight but for things we may take for granted, ie brain function… nerve function, temperature control and everything in between. Those villi do not grow back quickly, for me it roughly takes 3.5weeks. I feel awful that entire time and some time afterwards, I do not want to be glutened in that time.
This learning curve cost me jobs, multiple times. It cost me a BIG job I was offered in America for when I graduated. The year my celiac was triggered basically (Celiac can be triggered or you’re born with it, my chance of triggering it? 3%).
If I’ve been ‘glutened’ and I have a photoshoot. It sucks. It really sucks. I’ve only cancelled twice due to my celiac flaring up. But I’ve also done many of shoots when I have been triggered. Working with a smile through bloating, nausea, pre-syncope and a range of other symptoms I won’t go into…
Standing in a barn full of freshly milled wheat for a land girls photoshoot? NOT a wise idea and left me wheezing, nearly fainting and feeling awful for the next few weeks.
Now my POTS is not as bad as some, I’m actually nowhere near as bad as most, because I worked REALLY hard on my ‘re-conditioning’. Basically some days I wake up and my heart rate will fluctuate every couple of minutes from 45 - 145, from just standing up. My blood pressure also skyrockets, now most people with POTS, it plummets causing the fainting but I go the opposite way. It’s why I try to go for a walk every day in spite of however bad I’m feeling, it’s part of keeping ‘well’. Low impact exercise, consistently. But also? I eat a SHIT TON of salt and drink more water than anyone I know. I’ve even had a couple of teaspoons of salt on their own in the morning before a big shoot just to try and keep going. Oh yes, it sucks but it’s the only thing to keep me from fainting. Unfortunately sometimes POTS has it’s own way and I can barely remain upright, everything spinning like I’m about to blackout, ALL DAY. I’ve had two shoots, TWO in my entire career where my POTS decides to make an appearance. One was on a very hot day, I mean scorching so it’s understandable why it got triggered. Another was a BAD time. BAD BAD. And my model and HMUA were watching me like a hawk. It was a difficult day and if it had been any other model and HMUA I might have sent them home, which they offered to do repeatedly. To be honest with how dangerously high my blood pressure was and my heart rate hitting 35 I should have gone to my doctor and if it happens again I think I will, try and get something to prevent it happening again.
Basically think of someone super hypermobile and add some dislocations, collagen issues into the mix. I’ll keep it short but often if I’m shooting and having a flare up it’s not uncommon for my lower ribs to dislocate. I grimace and carry on. Fingers too… a touch more difficult but they pop back in easily. Often bouts of Costochondritis too which means my cartilage between my sternum and all my ribs likes to inflame for NO reason and has been shown to be as painful as a heart attack on some instances. Super fun.
The little missing piece that is still the unknown. I have some abnormal blood results which are suggestive of a slow growing brain tumor, it takes YEARS for them to show so it’s good they’ve caught these results but I’ve had several MRI’s and don’t show any other symptoms of what it is suggestive of as 99% of people do. So it’s an anomaly at the moment. But the stress of this has caught up with me and caused some anxieties but I’m dealing with it and doctors will continue testing. But for now if I start to worry I remind myself that there isn’t anything to worry about yet, don’t worry yourself until they find something and they haven’t. I keep it under control.
The Newest Member: Chiari Malformation
I had already written and finished this blog post before I got this diagnosis. I was seeing an ENT about bouts of tinnitus and a clicking soft palette when he decided to do an MRI of his own which showed this issue, now normally it’s rare to catch a CM (Chiari malformation) on a lying down MRI so it’s not good. Basically the back of my brain has herniated and is slipping from my skull to put pressure on my brain stem. This is because of the previously mentioned Ehler-Danlos Syndrome. I get these horrific back the head headaches, I’ve almost blacked out from and I have to completely detach from reality to get some control over the pain. Painkillers sometimes work sometimes not. An ice pack on the back of my neck helps more. But over the years I’ve been told numerous things, migraines, a-typical migraines, cluster headaches, sunct/suna headaches and everything else with no one agreeing to what it is; now we know.
Eventually I’ll have to have brain surgery and potentially a spine fixation surgery as I have cranial instability on top of this and due to this, if I don’t have surgery it seems the inevitable is paralysis. Just another thing to worry/try not to worry about.
It does effect my work, photography forces your neck at odd angles and holding your neck on the side for long periods; which often trigger these headaches. I’ve already moved onto a wrist strap instead as I literally couldn’t have a neck strap anymore, it hurt too much and triggered these issues every time. I thought it was normal to have chronic neck/shoulder pain and that dull ache in the back of my head was always going to be there.
I’m booked to see a Neurosurgeon soon to discuss all this.
I have other issues on top of these including some debilitating migraines (the irony of me writing this and then finding out the cause after the fact) and some heavy nosebleeds (sorry to the models and HMUA’s that have had to deal with this on shoot!) because my body isn’t a big ball of fun enough.
How do I carry on? Is it viable?
I have too. I’d be fired in a normal 9-5 job with the sick days I’d have to take, the precautions of simply eating I’d have to enforce, my overly sensitive immune system in contact with a flurry of people who often, let’s face it, have children who are big germ bags essentially. I couldn’t survive well, my quality of life would be far too low. Because I’ve tried, many times, when times got tough financially and yet it always ended with me having to quit or being asked to leave.
I look after myself. And not in an exercise, water and good diet kind of way, that’s the very first millimeters of my iceberg of self-health. I know my limits, I try to know my boundaries, I listen to my body and am painfully aware of what I’m capable of. I don’t like my limitations, I often push them to see if I can and get punished for doing so. I don’t ever drink (never been drunk), I’ve never smoked and have never done any drugs, not even weed. Just trying to stay alive over here.
If my models or HMUA’s eat in my house/studio and it’s particularly ‘crummy’ gluten filled food, if they knew the severity they might eat outside! But I cannot do this or ask them of this. So instead, I take a mental note of where they’ve been sitting, what they’ve touched and after they’ve left? The rubber gloves go on and I clean, frantically. I’ve had a model spill an entire sandwich on where I normally sit on the sofa, those cushions had to go in the wash because I tried sitting there after trying to clean and broke out in a rash and started wheezing. I can’t risk those things if I need to work as productively as I do. So I’m super OCD about these things. Because I have to be! If I didn’t I’d only get to shoot roughly once a month at best. Not exactly Rekha like is it?