Hidden Illnesses

Over the years I have had a lot of different illnesses and operations, and I've noticed that people react very differently to ones that are obvious or visible, like a knee replacement or a bug that might leave you pale and sickly-looking, and those that are invisible, such as depression or something affecting your insides. The hidden illnesses may not leave physical scars or change the way you look but they can be far more debilitating and have more of an impact on both your daily and future life.

I have many physical scars from surgeries but I also have the physical memories of get well cards, letter and emails. The hidden illnesses certainly don't get the same level of attention and I think it's mainly because they aren't obvious and therefore probably not talked about as much. Unless you walk around with a sign most people are oblivious.

I was diagnosed with severe autoimmune disease 8 weeks ago, a hard-core, life-sapping illness, often referred to as Rheumatoid Arthritis. It is not, as many people think, quite the same things as having a few swollen joints after eating spicy food, or having a crooked finger or toe. When it is severe, it is a chronic and progressive disease that causes inflammation throughout the whole body. Yes, it affects the joints and is incredibly painful but the reason it can be so debilitating is that your own body's immune system starts attacking itself. A normal immune system attacks outside invaders in the body but due to a bizarre re-wiring, the immune systems of people with RA fight themselves, which is a bit silly, and a bit crap.

A few months ago I woke up with a shooting pain in my right hand and wrist. It was very swollen and hot to the touch and I couldn't move it without screaming in pain. I thought back to what I'd done the previous day and realised I had attempted a bizarre new manoeuvre in my Pilates class and hung upside down on a trapeze for several minutes, alternately gripping the bar with my hands or feet... I thought maybe I had ruptured some tendons. I took myself off to A&E, they took an x-ray and agreed that as nothing was fractured, then it must be torn tendons. On with a soft cast, and 2 weeks later, a visit to my GP. My GP was puzzled. She didn't think it was tendons. In fact, she didn't think it was anything that I'd done physically and immediately sent me off for blood tests. A few days later she rang and told me to come and see her. I made an appointment and she very slowly explained what the blood tests had revealed. Acute Rheumatoid Arthritis. I, like many people, thought that Rheumatoid Arthritis was a few painful joints and I simply shrugged it off, thinking it would get better in a while.

I remember my father suffering from RA around the same age when we lived in America, and he had been treated, very successfully, with gold injections! I had never talked to him about it at great length because I had been away at University and by the time I was back, his symptoms had almost disappeared. He never spoke of the initial diagnosis and how it had affected him. My mother never spoke of the months spent helping my father get dressed because the pain was so awful. My sister never told me how shocked she had been, seeing my father bent and crooked and walking with a stick, aged 50. I was oblivious to it all, until now.

Unfortunately, the gold injections my father had are not the most common form of treatment used nowadays (as you can imagine) but as Rheumatoid Arthritis has no cure, it is one of the most heavily funded and researched illnesses. As a result, there are many ways for it to be treated with different drug therapies. You are never actually cured of the disease but most people do go through stages of remission and can have years where the disease lies dormant. The first 3-6 months are the worst I am told. The Rheumatoid specialist I saw a week after my initial diagnosis was very clear about that. Be prepared because it spreads through the body like an out-of-control wildfire, getting much worse before it gets better. It swells your joints and heats your body and feels like flu most of the time. A dull ache in the bones, an ever-present roaring headache, nausea and dizziness and a chronic fatigue I never thought possible. Without doubt, I have never felt so ill in my life. But it is hidden in my body, and apart from the lumps on my wrists, the puffy hands and knees, a bit of a limp and the red flush from the steroids, I look fine. Tired but fine. Rosy cheeked but fine. And because I look fine, most people think I'm fine.

I haven't been able to work for 4 weeks now. My doctor said I should stop working for 3 months but as a self-employed designer that is simply impossible. If I don't work, I don't get paid. If I don't get paid for a period of time, then my whole life falls apart. Initially, I thought I could strap up my hands like a boxer and carry on as normal but this illness has caught me by surprise. The exhaustion is overwhelming. By the time I have showered and dressed (very slowly using my left hand only), I feel as if I haven't slept for a week. Many mornings, I have barely been able to get out of bed as the pain soars through my body. Some days I can't move my fingers and other days I can't move my hands and some days I spend the morning with my head in the toilet bowl. My wrists are in soft casts much of the time, so I don't accidentally bend them and cause torturous lighting bolts to shoot up my arms and down my fingers. I have an additional complication and that is Sjogren's disease, an irritating infliction which causes extreme dry mouth and dry eyes. I hate it, and hate that if I don't constantly chew gum or suck a sweet or have a litre of water at my side, my mouth feels like a desert and my eyes itch and burn.

The pills are a work in progress too. I have no idea at this point whether the numerous medications are causing ill effects or it is the disease itself. The side effects, from what is essentially a low dose of chemotherapy, are horrendous... mostly nausea but with the added fun of vertigo and ringing ears, something that I can only associate with clubbing in London! It's impossible to try and describe how all this feels to someone that has no experience of it, and I hate myself when I text friends and moan about how shit I feel. Poor me poor me is one of the traits I despise but if someone asks me how I feel, I can't lie about it. The worst things is having to try and do anything for myself when my left hand is the only functioning one. And I am not left handed. I can no longer clean my teeth, brush my hair, pull up my jeans, do up buttons or make food with my right hand. I cannot grip you see. So imagine how long things take. I end up with toothpaste by my ear, my hair in knots and my shirts skewiff. It's ridiculous. And apart from people who have damaged their wrists, fingers or hands in the past, the only people that can relate to this are other RA sufferers.

I was advised to join an RA community online by my rheumatologist. Not only are there thousand of people that have gone through, or are going through the same thing but they can offer support, suggestions and advice that you might not get elsewhere. My family have been amazing which goes without saying and I truly cannot thank my mother and father enough for their hospitality and the offer of a bed and love whenever necessary. But the timing is shite. I am in a new chapter of my life, working for new clients and meeting new friends in Somerset and it really isn't the easiest of things to explain. I have had to cancel bookings and nights out, weekends away and dinner parties. I meet new people and wince when they shake my hand. I go to the cinema and can barely keep my eyes open. I try to go swimming and can't swim... treading water for half and hour like an idiot because I can't use my hands. I do get peculiar looks I must say. Some friends have been amazing, always there, always asking, always offering and always there at the end of the phone. Some have gone beyond... offering beds, bringing round food and books and cards. And others have problems of their own, their own health to look after, their own pain, their own suffering, and we trade paragraphs of support and  love via our phones.

Let's just hope things start to improve. It has been 8 weeks so far and the latest blood tests aren't so good. Worse inflammation, worse pain, worse. I have been at my parents house for a few days each week, and know I can relax here without worrying too much. I'm not asking for sympathy or even empathy, I'm simply asking for understanding.