As some readers may already know, I suffer with eczema.
I have already written about my experiences with this lifelong skin condition for Selfish Darling, exploring how one can still love their skin when it causes you physical and emotional pain. In many ways, living with a condition such as eczema is a case of ‘managing’ it rather than trying to ‘cure’ it.
It is only very recently that I became aware of the condition that is Topical Steroid Addiction/Withdrawal.
A condition that is a direct result of long-term use of steroid treatments prescribed to eczema sufferers, the very treatments I have been prescribed throughout my life. I was surprised, and delighted, to find a huge community of people on Instagram openly discussing and showcasing the physical, emotional and psychological effects of this lifelong condition, alongside eczema. With their no-filter posts, these Instagrammers are unapologetically educating and destigmatising these conditions. In many ways, these Instagrammers are helping fellow sufferers to feel validated, understood and less alone, an important thing when eczema effects millions of people worldwide.
Speaking to Instagrammers who are on the forefront of this movement and community for Selfish Darling I want to bring attention to this online space, for those of who might have eczema or may be suffering from the effects of steroid treatments.
What is Eczema?
The National Eczema Association describes eczema as the ‘name for a group of conditions that cause the skin to become red, itchy and inflamed. There are several types of eczema: atopic dermatitis, contact dermatitis, dyshidrotic eczema, nummular eczema, seborrheic dermatitis and stasis dermatitis’. Despite its red and inflamed look, eczema is not a contagious condition and you cannot ‘catch it’. Whilst the exact cause is not known, those who do suffer with eczema do so because they are predisposed to a mix of genetic and environmental triggers. ‘When an irritant or an allergen “switches on” the immune system, skin cells don’t behave as they should causing an eczema flare-up’, as the National Eczema Association describes.
On the whole, eczema is an extremely individualistic condition and in that I mean that it effects different people in completely different ways. From the areas it can effect on your body, to how it appears on your skin, to the treatments that may help, to the food or environmental factors that may trigger a flare up; it all differs person-to-person. What can be a trigger for one person may not effect another at all, or one person may suffer with eczema chronically on one area of their body whilst another has never ever had it there. It makes the condition often difficult to understand or let alone even treat. It is a matter of trial and error in many cases, by seeing what works and what does not. Frustrating and emotionally draining to say the least.
How can you treat Eczema?
Generally, there are a number of ‘accepted’ methods for managing eczema. This can include natural methods such as taking oatmeal baths, using fragrance free body washes and moisturisers and changing up your diet to remove allergens or irritants (dairy and gluten are the big ones). As well as this, a common medical treatment is, of course, the use of steroids.
For over 50 years the use of topical corticosteroids, or just ‘steroids’ has been considered a key treatment for the redness, itchiness and inflammation caused by an eczema flare up. The National Eczema Society explains how, ‘‘Steroids’ are a group of natural hormones, produced in the body by a variety of different glands. They are also produced synthetically as medicines. The topical steroids used for treating eczema are totally different from steroids used in contraceptive pills or for bodybuilding.’
Despite their commonplace use for all types of eczema, steroid treatments are not without their risks. Generally speaking, steroids are used to treat eczema flares and so should be used in short bursts with treatment stepped down or stopped when the flare settles back down. If used more frequently than prescribed or over a long period of time then there are a number of risks that come with using steroid treatments. These can include:
- Atrophy (the thinning of the skin)
- Lichenification (the thickening of the skin)
- Stretch marks
- Perioral Dermatitis
Then there are also a number of much more severe side effects. These include:
- Glaucoma (damage to the eye’s optic nerve
- Cataracts (the clouding of the eyes lens)
- Topical Steroid Addiction/Withdrawal
So What is Topical Steroid Addiction/Withdrawal?
Topical Steroid Addiction/Withdrawal (or TSA/TSW) is a specific adverse effect of steroid use and occurs when long-term users of topical steroids stop using them. The National Eczema Society describes TSA/TSW as something that can occur when ‘topical corticosteroids are inappropriately used or overused, then stopped. It can result from prolonged, frequent, and inappropriate use of moderate to high potency topical corticosteroids, especially on the face and genital area, but is not limited to these criteria’.
The condition is characterised by an uncontrollable spreading of eczema and dermatitis as well as inflammation of the skin. This then requires a stronger topical steroid to get the same result as the first prescription of milder steroids in order to sooth the skin. It is this cycle that is known as Steroid Addiction. When the steroid medication is then removed, the skin can become red, inflamed, oozing and sore for a long period of time.
There are a range of symptoms that can also be used to identify TSA/TSW. These include: burning, stinging, bright red skin, itchiness, sores and skin peeling.
In 2015 a National Eczema Association Task Force undertook a systematic review of TSA/TSW entitled ‘A systematic review of topical steroid withdrawal (“steroid addiction”) in patients with atopic dermatitis and other dermatoses’. The findings of this review found that whilst TSA/TSW is likely caused by topical steroid misuse, more studies are certainly needed to better understand this condition, its effects and how best to prescribe steroid treatments in the future.
The TSA/TSW Instagram Community
The Instagram community surrounding TSA and TSW is a vibrant and unapologetic one that comes from all over the world. Whilst the individual reasons and goals for setting up their Instagram accounts may differ, many of these Instagrammers are united by a wish to spread information about TSA and TSW to as many people as possible, increasing awareness and destigmatising the condition. As well as this, many of these Instagrammers wish to document their own ‘skin journeys’ through the social media platform.
Lily-May Brimson @eczemawarriorsunite
Has been documenting her skin for a number of years on Instagram, she describes how her own skin journey is ‘still very much happening’ and ‘has not been linear’. Brimson created the account as she was desperate to ‘try and calm my anxiety and understand my skin’ as she ‘felt alone for a long time’.
‘I happened to come across the #unhideeczema tag and followed it’, Brimson explains, ‘I then saw this beautiful community of skin sufferers who supported each other, provide tips and also just are such a great crutch to show me I’m not alone with auto immune disease’.
Michelle Li @eczema_warrior
Has equally been documenting her skin journey for a number of years on the platform. ‘I started this account to share my feelings throughout the TSW journey. I felt like I was learning a lot about myself and wanted to share’, she explains.
Through their posts these Instagrammers destigmatise how chronic skin conditions are perceived in everyday life by showcasing their skin at both its worst and its best, in the middle of a flare up and during phases of healing. No photo of their skin is too red, or too oozy or too dry to be posted on social media. It is this openness to share the physical and, often, emotional underbelly of these conditions which helps to educate new followers, and validate fellow suffers.
‘One thing I still find challenging’ Li muses, ‘is posting when I’m in the thick of a flare up. I’m very vulnerable at that moment because I’m often scared about how long the flareup would last. So often my thoughts are dark and depressing’. However, she also notes that ‘as I started posting even when I was in the thick of a flareup, people really resonated with me. Instead of depressing people, I think it actually made people going through the same thing feel less alone’.
Through her posts Brimson states that she wants to ‘help people. Full stop really’. Whereby she wants ‘others who are depressed, upset, hating themselves to discover Instagram as a safe platform to discuss their skin’.
Both Brimson and Li believe in wider education on the use of topical steroids is needed for patients who might be prescribed them.
‘If you use steroids that is fine as everyone is individual, but PLEASE research it’, Brimson insists. ‘Ask your doc how to apply it. Ask where you shouldn’t apply it. Write down the dates you have used it and remember it is not a long term favourable situation’.
Li wishes that ‘doctors would be more careful in prescribing this medication and that people can recognise the symptoms earlier’. She then adds that although ‘not everyone may suffer from TSW when they come off corticosteroids, people should still know the risks’.
The issue with eczema is that it is a lifelong condition, a fact that many find difficult to deal and means they will continue to use treatments they are used to. This leads to many people unwittingly using steroid treatments for far longer amounts of time than they should, without knowing the risks they face.
Whilst Instagram communities are a fantastic source of information and support they are no replacement for true medical research and advice. Thus, as an eczema community we need to band together to call for more research into the effects of steroid treatments as well as more research into Topical Steroid Addiction/Withdrawal itself. One can only hope that in the near future far more advice will be available for skin sufferers, allowing them to make healthy and informed decisions.
Do you have any favourite instagram accounts for eczema we should include? Let us know below!