At the time of writing this in 2013, it’s been fifteen years of living with atopic eczema as an adult. The years slip by but the condition remains as challenging today as it was when it first began to spiral out of control.
Just after I graduated from university, my eczema returned. I had been hospitalised with the skin condition as a child, and it had disappeared suddenly before my teens.
When it came back, I immediately recognised the telltale sign of an unbearable itch, which initially limited itself to the crooks of my elbows and the backs of my knees.
My general practitioner’s treatment regime of emollients and an ever increasing strength of topical steroids failed as the eczema spread all over my body.
My overwhelming early feelings were of anger, helplessness, and dread. I felt the eczema wasn’t being treated aggressively enough but knew there was no magic cure and that I might have to live with it for the rest of my life.
I was diagnosed with severe atopic eczema, and my health quickly worsened through a combination of habitual scratching and a barrage of infections that exacerbated the condition.
I thought nothing of ripping at my skin continually until the blood was flowing and I was exhausted and in too much pain to continue. My skin was forever dry, inflamed, and covered in open wounds.
I endured a broad range of symptoms in that first year of my relapse, learning all the spiteful ways that atopic eczema can manifest itself. Weeping eczema ruined bedding, stuck to clothes, and was a cloying, unpleasant reminder.
Yellow crusting meant infected eczema, which required antibiotics. Inflamed hair follicles caused white, painful spots all over my legs. Meanwhile, I derived a perverse pleasure from picking and scratching at wounds that hadn’t healed.
Admitted to hospital
I finally saw a dermatologist who fast tracked my admission to Chelsea and Westminster Hospital. It was both a relief to be well cared for and a worry that things had got so out of hand.
I remember feeling ashamed that I hadn’t been able to cope at home. Looking back, I should have been referred to secondary care much sooner—not because I somehow deserved better care but because I obviously needed specialist treatment a GP couldn’t deliver.
The common misconception is that adults with eczema are able to magically cope better just because they are adults.
Alongside all the physical symptoms were the psychological pressures. I felt frustrated, powerless, and embarrassed about the way I looked, and enormously guilty.
Eczema is, to my mind at least, like a form of self harm, and to that end I felt responsible for what was happening to me, and still do. Obviously I can rationalise that having eczema is not my fault, but ultimately the root of the problem is the damage done when I tear at my skin on a daily basis.
It was like having a split personality. When the eczema was subdued I could be outgoing, confident, and sociable; the other side of me felt awkward, was ashamed to be seen in public, and would default to his insular world.
Staying in meant not being judged, a safety net of sorts; something that continues even today.
I started the immunomodulator, ciclosporin, after that initial spell in hospital, which stabilised my health and gave me a glimpse of how I could manage my eczema, without it controlling me.
Over the next 18 months, my dose of ciclosporin was first increased to the maximum safe level for my body weight to keep the eczema at bay—but when blood tests flagged up potential problems, it had to be gradually lowered, then stopped after it became ineffective.
Since the age of 21, I have been taking ciclosporin, azathioprine, methatrexate or a combination of oral tacrolimus and mycophenolate at one time or another. All share one characteristic: my body adapts to them and the eczema becomes uncontrollable.
In the last decade and more, I have been admitted to hospital a number of times and the tally of consultants I’ve seen stretches into double figures.
I’m an extreme case—a fact I often need to remind myself of after a torrid scratch and the usual soul searching – though not as extreme as you might think; there are many others out there going through the same torment as I do.
Along with my systemic medication, the side effects of which included severe nausea, shakes, extreme tiredness, and being prone to dizzy spells, I have been prescribed short courses of oral prednisolone.
This has always been successful as a short term fix—but the impact of rebound eczema often makes me regret taking it. A week of respite will always precede a horrendous flare, but to see my skin clear, even for a short time, can be a real boost.
Coping with eczema, as I’ve learnt over the years, extends far beyond taking steroids, immunosuppressants, antibiotics, and antihistamines. Eczema interferes with every aspect of life. Tackling people’s perceptions and lack of knowledge in the wider world about eczema was a serious shock.
I was once warned not to take any more time off work or I would be fired, a week after coming out of hospital. There is no quick fix for eczema, and for some people, whose only reference point may be mild eczema, the severity of my condition is hard to understand.
The unpredictable nature of the condition has made forging a successful career really difficult at times. Taking time off work can be awkward enough, but having no control over the situation and finding a suitably understanding employer has been hit and miss.
Additional stresses include an impossible desire to keep my condition secret from a new employer so as not to stand out as troublesome; explaining eczema to new colleagues all over again; applying creams effectively at work; and balancing the drowsy effects of hydroxyzine with being able to do a full day’s work.
The past three years have seen the development of my own online editorial business, working from home, as a cricket journalist. This allows me the freedom to be entirely flexible around my eczema and down tools or swiftly react when the need arises.
I work longer hours than I’ve ever worked before but at times to suit me and it’s true that running your own business can be incredibly stressful at times, but it is quite simply the best thing I’ve ever done; both for my skin and for my career.
Needless to say, through all of this a support network is invaluable, and trusting someone with all your worst problems concerning eczema is a vital crutch on which to lean.
I am lucky enough to have a wife who accepts me, incessant scratching and all. She is not judgmental, nor does she get angry at me for repeatedly doing such terrible damage to my skin.
To be built back up again when at the absolute lowest point is something I’ve had to rely on a number of times, and it’s both a stark warning about how debilitating eczema can get and humbling to have someone there to help and understand.
What shouldn’t be underplayed is the impact on those who live with someone with eczema. Everything from the lack of sleep to the emotional stress of seeing someone continually hurt themselves has not been lost on me.
Where am I now?
It’s winter 2013 and I am at the cusp of my highest possible dose of ciclosporin; a drug I’ve returned to after maxing out my dose of methotrexate so trying old treatments remains the only route.
There are new treatments on the horizon – notably injectable drugs that have had success in treating the allergic response in asthma. Whether they transfer to eczema remains to be seen but always being on the cusp of needing the latest medical developments is not a reassuring place to be.
Without that core stability of a successful treatment, I flare constantly and am easily infected. I think I have a reasonable outlook: I have squared that I might live with this forever but want a semblance of control to enable me to lead a normal life.
I am 36 and already scarred from years of scratching. I’ve taken more oral steroids, antibiotics, and immunomodulators in the past year than ever before and am realistic enough to know there might be consequences when I’m older—but what are my options?
To end on an optimistic note, I took a RAST blood test recently that identified an allergy to house dust mites that was off the chart.
Not a revolutionary concept you might think but house dust mites has not been tackled for many years – by my parents I imagine – and is now something I can be proactive about.
The point here being that even when you are utterly defeated by eczema and at your lowest possible ebb, there is always hope and always something to cling to; to embrace and motivate you. It might not feel like it at the time but there are always options.