Last Updated on 1st March 2021 by Caroline Haye
As we approach the end of our second countrywide lock-down here in the UK, it is looking increasingly as if a return to something resembling normal will coincide with the arrival of spring. And I can’t think of a better boost to everyone’s morale than that. Maybe then we can finally start to see this whole global crisis in our rear view mirror instead of all around us. Of course, how each of us remembers the events of 2020-2021 will differ according to our circumstances… Which is why I decided to pose the question: is there such a thing as a vitiligo view of the pandemic? Among all of our shared perceptions as part of the human race, have there also been some experiences that vitiligo sufferers would recognise as being more specific to them?
Vitiligo feedback from lock-down
We have heard a lot in recent months about the impact of the pandemic on people’s mental health. Lock-downs and other safety measures have resulted in social isolation, loss of income, financial insecurity and wider concerns over an uncertain future for millions of people across the planet. These experiences are familiar to us all. And, worse still, the pandemic has resulted in suffering and bereavement for countless individuals and families.
So it is not surprising that anxiety and depression have been widespread. But, of course, we all respond to tough times in our own way. Age, personality, lifestyle, occupation, geography, culture and financial situation are all factors that have a bearing on how well we have coped. So I was keen to know how others with vitiligo have coped. And whether or not having a skin disorder like ours has influenced people’s perception of the past year in particular ways.
Personal perspectives after a year of COVID
I decided to ask a number of my vitiligo contacts around the world to share their personal perspective on the last 12 months by answering the same set of questions each. Not that there was anything scientific about this process… It wasn’t intended as a full-blown survey. And I am not suggesting that the results are representative of all people with vitiligo. But I found the feedback I received to the questions below genuinely interesting. And, having lived with vitiligo myself through all kinds of circumstances for most of my life, I could relate to many of the comments. Maybe some of them will resonate for you too.
Has the virus impacted your vitiligo?
None of the individuals I corresponded with had had COVID-19 themselves (at least, not knowingly). So it wasn’t possible to get any anecdotal feedback on whether infection with the virus had affected their vitiligo. But the financial and psychological fallout of the pandemic was plain to see. In that respect, many of the comments were unsurprising because they matched the common experience of us all. For example, the sense of economic and emotional insecurity and the restrictions on daily life. But there were some responses that were more specifically influenced by the vitiligo factor, for example, stress levels… And not always in a bad way.
How has the pandemic affected your stress levels?
The answers I received to this question were varied. Most, though not all, acknowledged that their vitiligo was a factor in their stress levels. But this was not always in a negative sense.
GS from Gothenburg, Sweden responded, “No, not more stressed in general, but I certainly don’t want to have COVID, so I keep distance and wash my hands often. Maybe a tiny bit stressed about what impact the virus or the vaccine will have on my immune system. But maybe a bit less stressed overall as I’ve been working from home peacefully”.
JM from Pinner also appreciated not having to mix with other people every day… “The pandemic has made me feel less stressed about my vitiligo as I am finding time to heal and nurture my skin.”
In fact, the majority of respondents agreed that they had felt less stressed about their vitiligo during the pandemic, even if other aspects of their life had been adversely affected.
On the other hand, GA from Leytonstone felt her stress levels had increased, both in relation to her vitiligo and life in general. She wrote, “It has made me a little more stressed due to lockdown restrictions, e.g. having an appointment for leaky gut syndrome via Skype rather than face to face”. I have had to go out for groceries and I am extremely careful with wearing a mask from the moment I step outside”.
NQ from Chicago, USA also experienced an increase in stress, along with a worsening of her vitiligo. She commented, “Right now I am hiding due to the pandemic and feel justified to do so, but as my vitiligo keeps spreading so does my stress level”.
What impact have lock-down and social distancing had?
A minority of respondents said that the lack of interaction with others had not had any particular impact from a vitiligo standpoint. (Most of these had either continued to go to a place of work or else ad always worked from home.) And the majority who said it had affected them demonstrated that there are always two sides to every situation… An up side and a down side.
Kath T, from Ripon, felt “almost freed from her vitiligo” because staying home has “protected me from the outside world and meant that I don’t even think about my white patches from one week to the next”. Whereas Lisa from Perth, Australia noticed the opposite could also be true. She observed, “I do find that any situation where I am given more opportunity to ruminate is negative for how I cope with my vitiligo”.
Anne, from Warrington, was one of the majority of respondents who reported feeling better about their vitiligo during the pandemic. “I think possibly, I feel less anxious about my vitiligo because I’m not seeing as many people. I generally feel more relaxed working from home, so perhaps this has had a positive effect… More time to think about healthy eating and keeping fit. I’m convinced that this has a positive effect on vitiligo.”
Similarly, JM found that “lockdown has certainly made me feel less anxious about my vitiligo because I have been in the comfort of staying at home and not having to worry about public appearances”.
In fact, some individuals found seclusion so comfortable during lock-down that they almost dread it ending. NQ, for example, was “worried when the lock-down will be lifted, I’ll have to go back to work, in person. I am not looking forward to having my discoloured hands on show.”
Has your vitiligo been a factor in wearing a mask?
Not surprisingly, the answers I received to this question varied mainly according to whether or not the individual has vitiligo on their face… In which case they generally welcomed the opportunity to hide it. Sheila, from New York, has white spots at the corners of her mouth and below her lower lip and is glad to be able to hide these with a face covering. But KS from Dundee in Scotland always worries that taking his mask on and off all day will rub off the cosmetic vitiligo camouflage he uses on his jaw.
Other replies focussed more on purely practical aspects of mask wearing. For example, one respondent, a mobile barber, has to wear a mask for long periods at a time and dislikes it, finding it hard to breathe… Whereas others simply recognised the importance of masks in helping to stem contagion and did not see their vitiligo as a factor.
If you worked from home did this impact your vitiligo or how you felt about it?
For those who have been working from home, the majority said they found this beneficial. In most cases, this was because it meant they didn’t have to worry about hiding their vitiligo or about the reactions of others. A few respondents said that home-working had not had any impact one way or the other. But, interestingly, not one of them told me they missed going to a place of work every day. Of course this could simply be because I didn’t ask a big enough sample.
However I feel sure that if I had polled the same number of people from the non-vitiligo population I would have come across some who were keen to get back to personal contact in the workplace. And I’m guessing the difference reflects the fact that withdrawing from society is quite a comfortable coping mechanism in vitiligo.
One notable exception to the better-off-working-from-home verdict was a woman who found that virtual meetings made her feel more self-conscious about her vitiligo than face-to-face ones. She said, “I have been working at home but in some ways, it was better when everything was normal. Now everything is digital it has actually given me more stress and anxiety about being in Team Meetings and Zoom. I have never felt comfortable in front of the camera and having to deal with vitiligo is an added stress that I feel only vitiligo sufferers might feel or recognise. I just feel employers need to understand interaction in front of a camera or zooming into your home is not always the best way to move forward”.
Has your access to vitiligo treatments been affected?
There has understandably been severe disruption to non COVID-related treatments over the past year. So the responses I had to this question were much as I expected. There was obviously no impact for those not currently receiving therapy. And the other category that was unaffected was those who are using their own therapies at home (e.g. home phototherapy, nutritional therapies and repeat prescription medicines). But individuals who were waiting for referrals or clinical treatments when the pandemic started were adversely affected.
For example, one young woman who had been receiving treatment on the NHS found that the only way to continue was to pay for it privately. Another had been due to start a course of phototherapy at the hospital but found this was no longer available. And another took the decision to leave her 6 month working contract early so that she could keep vitiligo-related appointments with dermatologists and doctors rather than miss out.
How well do you feel you have coped during the pandemic?
This was a very subjective question and so the answers varied considerably. Most were quite upbeat and positive. On the whole, most people felt they had coped well. A number of them said they counted themselves fortunate, recognising that there were a lot of people much worse off than themselves.
Even those who admitted to struggling with circumstances showed an impressive degree of self-awareness and determination not to feel sorry for themselves. One woman experienced bouts of depression and sadness due to the lack of human contact. But, rather than letting this consume her, she was being proactive and getting weekly therapy for this.
Most people seem to have found ways to make the best of their situation. This comment, from the same person who was unable to start her phototherapy, is a perfect example… “The positive side of having vitiligo in the summer of 2020 was that having to work from home meant that I was also able to spend time out in the garden and really felt connected to nature which helped to calm my stress level. Just having some natural morning sun felt like therapy to my skin and mind.”
Lisa in Western Australia expressed gratitude for living in a region that was not severely affected by Coronavirus. But she still had to spend more time than usual at home and recognised the emotional pitfalls of this. Her coping strategy was to keep busy. She wrote, “Structured, meaningful and purposeful activity makes all the difference to how much I focus on my patches”.
Esena admitted that the pandemic had had a financial and emotional impact but actually experienced some very significant positives too… “Luckily it has not affected my vitiligo. In fact my change of diet has fixed it and brought my normal colour back 98%. Lockdown has given me a chance to reflect on life and I’ve been taking care of myself a lot more now. Training meditation etc.”
Have you had a vaccination, and how do you feel about this?
At the time of asking this question, none of my contacts had received a vaccination. TI, from the Netherlands, was one of many who were apprehensive that it might make their vitiligo worse. But the majority were keen to have the protection against the virus that it would give them.
LB summed up her feelings this way: “As a healthcare worker, I will need to be one of the first to have the vaccine once it does become available. I will be grateful for the opportunity to have a vaccine, however, after such a short rollout period I do have some concerns about it’s potential to affect my vitiligo negatively.”
Joel from Weston-super-Mare commented, “I have mixed feelings around having the vaccine. I would like to understand more about the effects of the vaccine before I had it”… A hint of caution shared by JM, who wrote: “I will be happy to have one as I feel it will be some protection. But at the same time knowing there will always be new and better ones coming along which may actually have been better for me too”.
My own viewpoint
I found this cautious response completely understandable and I share it myself. But it seems that the majority of my contacts understand that the risks of not being vaccinated are likely much worse than any that the vaccine itself might or might not pose. And I found it encouraging that I only received one comment indicating a decisive refusal to accept a vaccine.
My own position is that I will be getting vaccinated as soon as possible. What I have read so far reassures me that none of the vaccines are likely to make vitiligo worse. (Unlike the virus itself, which would certainly increase inflammation throughout the body). The only risk to vitiligo that I am aware of in having a jab is the possibility of the puncture wound itself creating a Koebner effect. So I shall be asking for the jab to go into an existing childhood inoculation site which has never re-pigmented. By doing this, I should be able to avoid any new patch occurring. (For expert opinion on the safety of the vaccines for vitiligo patients, see Dr John Harris’s blog on the subject.)
A shared common experience
Looking at the bigger picture, it seems to me that the global fallout from COVID-19 has done as much to unite us as a human race as it has to isolate us as individuals. It has imposed the same social, economic, psychological and health-related circumstances across virtually the entire planet… Meaning that – even in our socially-distanced seclusion – we have shared a far greater common experience with the rest of humanity than we ever did in normal times. But, of course, within that shared experience, we have responded to the crisis in our own ways. There are many factors in our individual circumstances and personalities that influence how we perceive events and cause us to respond a little differently from the next person. And it is clear from the feedback I have received from the participants in my mini project that vitiligo is one such factor.
Recurring themes and interesting contrasts
Although each individual had their own unique outlook, there were some recurring themes and some interesting contrasts. For example, the lack of human contact was both a comfort and a refuge on the one hand but allowed too much opportunity for introspection and obsession on the other. The prospect of a vaccine was welcome because of the protection it would give against a dangerous virus. Yet this was tempered with a degree of fear of unknown side effects. For some, restrictions had disrupted treatment, yet for others lock-down had allowed them to pursue more holistic remedies.
Amid all of this feedback I noticed one recurring theme that had nothing specifically to do with vitiligo. But it did strike me as characteristic of the majority of vitiligo friends I have met… An inner strength, resilience and determination to make the best of things. You could argue that this is only because the kinds of people who would be willing to participate in a project of this sort are generally helpful, positive thinkers. And that may be true up to a point. But I also believe that living with a condition like vitiligo actually makes you stronger.
It teaches you to persevere and overcome. And it forces you to reassess what is important to you. (Which is something this pandemic has forced on us all to some extent.) Not only that, but it teaches you compassion, reminding you that there are always others worse off. These attitudes were all evident in the responses I collected and reinforced my impression that vitiligo sufferers are a good bunch of people to have around in a crisis.
So I will finish with a big thank you to everyone who helped me compile this article by providing their feedback. Not everyone wants to have their name or identity splashed across the internet. So I have, of course, respected your anonymity as individually agreed with each of you. But you know who you are and I appreciate your participation. 🙂
(On a related topic, you may like to check out my Vitiligo and Coronavirus post from a year ago.)
