We're very pleased to publish this guest blog by Harriet Hammond about how to cope if you're working through TSW. The image above is of Harriet on her first day back at work after being signed off during topical steroid withdrawal.

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If you are working (or studying) during TSW, there’s a good chance that you will experience some level of disruption if your symptoms get severe.

When I started going through TSW I managed to keep working for the first 3.5 months, and to begin with I honestly wondered why others had have to stop work for this; I thought it’s uncomfortable and ugly but if I keep going like this, I think I can manage.

HAHAHA! How wrong I was...

I work for a charity, supporting stroke survivors with communication difficulties. I work in the community, driving around the county to visit people in their homes, along with meetings, events and general admin duties. I am a team of one.

Here are some things to think about when it comes to working and TSW:

Explanation and expectation: keep it flexible

No one can predict how long this will take and how bad it might get. If you feel comfortable doing so, have a conversation with your manager about what might be to come and give some suggestions of what they could do to help you continue in your work as best you can to keep disruption to a minimum but make sure you are as comfortable as possible. Consider working from home, a change in hours or responsibilities, relaxed uniform rules and having more support at work if this can be agreed.

(image: Harriet's skin while she was still working)

You might be able to have this conversation at the beginning of your journey, you might be having it as the circumstance necessitates.

When someone suggested I take two weeks off to rest and get better, I had two thoughts:

1. I can’t take two weeks off! What would happen to the service without me for that long?

2. Two weeks is likely to be a drop in the ocean in the (unknown) timescale of TSW, so what’s the point?

In the end I basically ground to a halt when I couldn’t carry on and was signed off for a month. I felt relief that I didn’t need to keep going anymore and could just stop. I didn’t go back for three and a half months.

(image: Harriet working from her bed)

I had update meetings with my manager and I sent new sick notes in as needed. As I returned, I built up my hours and responsibilities gradually. I still wasn’t sleeping well so I had a later start and I didn’t do home visits straight away. A new member of staff was (eventually) brought in to manage things while I was off and as I returned, but it was still a struggle. I grimaced getting in and out of my car, I scratched like fury and there were days I put clothes on over raw weeping skin and drove myself to work on 30 minutes sleep. I remember a time doing an event at a hospital with my colleague and I had to ask her to stick some posters up as I couldn’t raise my arms without the skin ripping.

Comments from others

People seem to think they have a right and a need to comment on people with skin conditions in a way that they simply wouldn’t if it was another long-term health condition. Whether it’s avoidance, pity or unsolicited advice, people just don’t seem able to keep it to themselves when they see a problem with someone’s appearance. I was lucky to work either alone or with people with so much going on in their own lives that what I looked like and whether I scratched as I talked to them wasn’t a concern. I still apologised to people I met about my flakes or just kept my head down where possible and I just didn’t feel myself for many months. The only comment I remember really was someone asking me if I’d been painting at the weekend as she thought it was paint flecks on my glasses...obviously it was skin flakes!! I just told her the truth and she felt bad for a moment and we moved on.

On the whole I use the fact that my symptoms are visible as an opportunity to tell people about TSW! If you feel confident and comfortable doing so, I’d recommend it as it takes the focus away from you as an individual and peaks their interest in the condition. If you feel better pre-warning people before they have a chance to say anything, do it. Most people will respond with ‘oh I wouldn’t have even noticed if you hadn’t mentioned it’ – this might be a brazen lie but you can then just move on and it’s not the elephant in the room.

Stress

A lot of people find stress to be a trigger for eczema and TSW flares. Someone saying ‘don’t stress about it’ doesn’t cut it so you need to actively manage your stress as best you can for you.

• Setting realistic goals and expectations for yourself and sharing these with your manager is important so that you aren’t burying your head in the sand and struggling to maintain a level of work that you can’t sustain. Set priorities for your work, focus on the most important stuff first and learn to let some things go

• Build in activity and rest into your day. Take a walk around the block if you feel your stress building or if you haven’t moved for more than an hour. Eat your lunch away from your desk – alone or with others but take time out

• Do 5-10 minutes of mindfulness or yoga when you wake up, before bed, or as needed (there are apps and videos on Youtube)

• Talk. To colleagues, friends, family, your pet, whatever. We go through so much during TSW and we have so many questions, thoughts and fears. Holding everything in is poisonous and our skin can feel that. Let it out or write it down or have a cry, sometimes it can leave you feeling so much lighter. There are groups on Facebook and lots of support on Instagram, search #tsw and #topicalsteroidwithdrawal

(image: Harriet catching some sun in her car)

Effect on finances and career

If you have to take time off, reduce your hours or even take time out from working for a period, there could be some consequences to consider. Check out your employer’s sick pay policy and find out what you are entitled to. For those who are self-employed or work for an employer who doesn’t have their own scheme, you could still be eligible for Statutory Sick Pay for up to 28 weeks so it might be worth looking into this.

Although there was no massive impact on my income due to TSW, I have spent thousands during the last 2 years on trying to treat, manage or cure my skin. Unfortunately, working for a charity isn’t a big money-earner, and I am not in a position to ask for a raise. You might want to save in a TSW fund before you start, or ask for financial support if you think this might be an issue. If it helps, you don’t NEED to spend a lot on most of the stuff I did (but false nails, supplements and topical creams don’t always come cheap and they can make the journey more manageable).

(image: Harriet's very sore skin during TSW)

If your recovery takes a considerable amount of time, it might also have an impact on your career progression. Had I not become so ill, I would have probably left my job by now and changed career. I could have had to quit my job and start again, so I am grateful that I have kept my job. Maybe this is something I had to go through, and will lead to changes that I couldn’t have imagined... watch this space! You might find this gives you a chance you didn’t know you needed to change career or start something completely new.

Positives

For all the cautions and complaints, there are some up sides to think about too. Your own journey can teach you many skills that you might not have gained on the normal trajectory of your life. I feel that going through TSW has given me new insight in supporting people with their own health problems. I often find myself drawing on my own experience in understanding others', from the impact on a relationship and social life, the importance of logging progress and the frustration from an unknown timeline and non-linear healing. Having to take time out from work can give you a chance to regroup or rethink. It may lead to a change of focus or direction or even a career change.

Harriet Hammond is one of founders of Scratch That charity, which aims to provide support and information about topical steroid withdrawal. She charts her own TSW journey as @tswharriet.