Daily life with a burn

Many of the people we talked to described impacts on their everyday lives from having a burn. Some were short-term issues, but there could also be longer-term impacts.

This section covers:

  • Ongoing challenges
  • Day-to-day problems, such as getting ready and sleeping
  • Issues with skin, such as itching, and using moisturisers
  • Mobility, flexibility, and movement
  • Coping with sun and temperature changes

Ongoing challenges

In the first few weeks or months after having a burn, impacts on daily life included going to medical appointments, having initial treatments, restrictions on mobility from bandages and wounds, and pain making it difficult to sleep.

Amy and Chris highlighted “the logistics of everything” they had to consider when their son was first burnt and discharged from hospital, including the longer term impacts.

Amy: Because, obviously, you’re trying to think in the hospital and… We’d obviously worked out that his bed would be an issue and we’d taken steps to do that, but actually, you kind of need, need to go through the logistics of everything. Like, all the normal stuff, so the going to the toilet and things and… I mean, it would have been… Fortunately, we have a toilet upstairs and a toilet downstairs – we’re very lucky – but some places you wouldn’t have that. So, just the logistics of if you were, if we only had a downstairs loo, just getting down to the downstairs loo to go to the loo in the night, or something.

Chris: His legs, which are now swollen and twice the size because they’re covered in bandages, and it’s like 'Ok…', so we now found… I think I ended up bringing your shoes down, didn’t we?

Amy: Yes.

Chris: Because it’s like ‘Ok, so we need shoes that are now so many times so many sizes bigger than his own because of his bandages.’ Just because of his bandages. And there’s all those kinds of practical things that you, you wouldn’t even think about.

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For everyone that we spoke to, the burns had been sustained at least one year before the interview. Some people had lived with a burn for a long time, like Mercy, whose burn happened 25 years earlier. As the burn healed, the impacts on everyday life eased off for some people. Sabrina summed up her experience as “a big event that impacted me [then] that doesn’t really have an impact now”. However, most people we talked to continued to experience some day-to-day impact (such as chronic pain) and had, as Mercy explained, “learnt ways of how to manage it… with time”.

Day-to-day problems, such as getting ready and sleeping

Some of the people we spoke to expressed how getting ready for work, school, or college took longer because they have to take extra steps, such as applying moisturising creams or sun lotion.

Raiche said that having burns means it takes longer to get ready in the morning.

Having burns definitely impacts my daily life because I can’t just get up out of bed and go, especially when it’s really cold! So, how does it impact my daily life? So, in the mornings I have to shower, and I have to cream otherwise my skin gets really sore and that’ll take about anywhere from half hour to 45 minutes and then I’ll have to get my partner to cream my back because I actually can’t reach it because of the burns and scars, and my movement is quite restricted. Then after that session I’ll probably come down, have a cup of tea, log on and do some work from home.

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The extra time involved could be off-putting. Raffaella hasn’t been back to the gym since her burn because it now required more planning: “just the thought of like ‘Oh, when do I remove my gloves, when do I wash, when do I put the silicone [on]?” Tara once used camouflage makeup for a special occasion but thinks she would find it “stressful” applying the makeup more often because of the time it takes and decided that it wasn’t the right choice for her. However, some people find camouflage makeup very helpful and can become more confident using it, over time.

Struggling to sleep well was sometimes an issue too. A few people, like Jeff and Raffaella, would sometimes have dreams, nightmares, and flashbacks about the burn. Raffaella told us that, early on in her recovery, she had flashbacks to being burnt “every time she drifted off”. Some people commented that their sleep was impacted by pain or discomfort.

Sarah has struggled to sleep since she was burnt and continuously wakes in the night, which has a “knock-on effect” into her everyday life.

I guess sleep is one of the things that probably, you know… I do struggle to sleep but it’s not always the most comfortable and that kind of has a knock-on effect onto your life every day.

So, the sleep issues, would you say are the main kind of discomfort?

I guess. And, I guess, the stress over a prolonged period of time I feel has had an impact on my general health. Sometimes I do wonder what my general health would be like if it wasn’t for the burn. The burns themselves are what they are but I do sometimes think the impact of so much stress on my health, I can probably notice it there more than the actual burn, if you know what I mean? But it is what it is and, you know, a lot of it just takes time, doesn’t it?

Sleep is a big one, I don’t sleep well now unfortunately.

Is the trouble sleeping, is that from a physical pain or is it not being able to fall asleep or being too anxious to fall asleep?

I mean, usually I can go to sleep, but I wake up continuously through the night. But I don’t even know why, I just do, and I have done since I was burned. Sometimes obviously it’s pain but not always. It’s, you know, one thing that’s never gone back to normal.

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Issues with skin, such as itching, and using moisturisers

It is common for people who have been burnt to experience problems with their skin, such as feeling itchy and cuts being slower to heal on the burn area. Helen X, Saffron and Mercy told us that skin grafts could be particularly itchy. Marilyn disliked anything bumping against her burn scars as the skin feels very sensitive.

Sometimes burn injuries can cause skin to feel itchy because the glands in the skin have been damaged and this can lead to a sensation of itching. As Charlotte recalled, “anyone that’s had burns will know the itch, and we call it itching because that’s what it is, but it’s such an intense thing”. The part of the body where skin is taken for a skin graft was also itchy for some of the people we spoke to.

For some of the people we talked to, there were additional things that made their skin more sensitive or uncomfortable. Washing up would sometimes irritate Tom’s hands and make them dry. Saffron told us that using a different washing powder for her clothes had caused her skin to itch. Sinead’s daughter developed eczema on top of her burn scars which has been “quite troublesome”.

Kate finds it annoying when her burn scars itch.

Like I said, on my arm and my leg not really. The one on my side, I don’t know, it’s day to day. Occasionally it’s a little bit itchy and it annoys me because I don’t like scratching it. And I don’t know why I don’t like scratching it but any of my burn scars, I don’t like scratching. I think it’s because if I get a cut on it or anything I just, I don’t know, it takes slightly longer, in my experience anyway, to heal. But it doesn’t heal bad, it’s just there for a little while but then the fact that it’s got like a scratch or something on it makes it itchier anyway, so I just don’t like messing around with them. It’s probably an instance where the moisturising would probably actually benefit me, but I don’t like doing it.

So, is itching a little bit of an annoyance?

Yeah. Sometimes, but I think it’s just like any part of your body, because I try not to scratch it, I just, I notice it more because anywhere else on my body I would just scratch it and move on with my life but burn scars I don’t like messing with, so I just leave them and then they annoy me because they’re itching. Doesn’t happen very often but when it does it’s “Oh for God’s sake!”.

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To help with the itching and dryness, many people used emollients, creams, lotions, and moisturisers. Some of the people we spoke to had had reactions to shop-bought products and were worried about additives in them. Helen X told us that as well as using a cream, she sometimes also used a moisturising shower gel in the morning and a body lotion in the evening.

As well as the creams etc themselves, the process of rubbing and massaging the cream into the scarring was important for people like India and Helen Y. Even though Saffron said it “took me a while to accept” that applying creams “was going to be a part of my daily routine”, she feels it’s important: “that really helps again with the tightness, different areas of tightness and flexibility, and also the appearance”.

Sinead’s daughter, Elizabeth, has moisturiser and other creams applied to her skin multiple times a day.

So, Elizabeth gets up in the morning, has a bath in all the emollients and lotions and potions that you become very accustomed to. She is then moisturised and massaged – again, depending on surgery, you know, what she needs done at that time. Post-healing you have to massage these scars quite a bit so it depends whether we just put the cream on or can be a bit more lengthy. She has two visits during school day, where she will have emollients again, and steroid cream, depending on her eczema, applied. She comes home from school, has more cream applied and then she will take a bath or a shower just before bed, the same process that she has in the morning. So, emollient, creams, bathing all just to keep her skin hydrated and to help with her movement as well. The more massage she has, the more mobile she is.

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Although those who used creams said this helped with feelings of discomfort, some said that they took a long time to apply and, as a result, they were “more time poor”.

Jasmine spent a lot of time applying moisturiser to her daughter’s burns.

I’m more time poor because I now have to spend the time, for the last two years, used to be four times a day I was treating her. Four times a day for almost two years, making sure that the area is covered. And you have creams with you when you go away or when you go on a sleepover and, you know, it’s time and it’s thought and it’s just one more thing to do.

Yeah, and is that difficult for you?

It can be, you know, and then if you forget you think “Oh jeez, you forgot” and then you feel guilty because you forgot about it. So, it can be difficult but then you just have to think “Ok, I’m doing the best I can. Let’s try to stay positive, I’m doing the best I can.”

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Some people said they sometimes found it difficult to moisturise their scars as often as they felt they should. Gary said, “I do try to cream at least once a day but, again, it’s like I should be creaming at least two to three times a day with the extent of my scars”. Raiche told us that another downside of using moisturisers and other creams is that they had sometimes ruined clothes by leaving stains.

Mobility, flexibility, and movement

Sometimes, depending on the part of the body affected by the burn, a burn injury can cause issues with flexibility, mobility and movement. In the early days, this may be because of bulky dressings, bandages and pain. As the wounds heal, difficulties with moving may be caused by scar contracture, which is when scar tissue thickens and tightens over time.

India has some mobility issues where her scarring is quite tight.

I think I’ve got some minor ability issues. So, my left arm doesn’t really completely straighten because the scars are very tight round there. My neck’s quite tight, so like, raising my head up really high can be a bit of a stretch.

But scars don’t grow, so when you have them when you’re really young you’re wearing a-, it’s like putting on a t-shirt that you got when you were three years old, it just gets tighter and tighter. So, I had to have more surgeries as I grew up.

So, I’ve got quite tight burns on my neck, and it’s supposed to be a very relatively non-invasive way to soften them up, because they burn tiny little holes into your skin, it fills up with collagen and then that helps it become more stretchy.

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As well as some people recommending massaging in creams, Saffron had found gentle exercise useful: “I do a lot of yoga because I find that it helps with the muscle underneath the scar and actually stretching… so that the skin can then also move with that muscle”. For others, like Raiche, surgery helped relieve some of the tightness of the skin, whereas before she wasn’t able to close her eyes and was “always dribbling”.

Raffaella exercised her hand as the burn healed. She also used creams, massaged the skin, and tried other things like acupuncture and vitamins.

I think, in a way, I was lucky that the scars are in my hands, because, like, you’ve got to do so much stretching and exercise, especially at the beginning. But because it’s in your hands you can just do it, I guess, like they’re always in front of you, you can just be constantly… And in fact anybody that saw me, I- "You are just constantly stretching, any awaken time", you know. And that does not come without any pain, it’s excruciatingly painful to stretch when the scar’s actually growing so much in the beginning and everything is swollen. But I was determined not to give up because, obviously, the physiotherapists, the OT (occupational therapists) were like, you know, ‘You need to adjust to your new normal, and your new normal might be very different from your…’ I’m just like ‘I’m 42, I am going to do…’, like- I understand of change and I understand it’s not going to be the same as before, but to the extreme these people are saying I might not be able to use the full use of my hands, so it’s like ‘Ok, if it happens it happens, but I’m definitely going to do my very best not to make it happen.’ So, I was absolutely determined that I would do anything, you know, to… And I did, I did. I made sure I stretched constantly, I creamed it, I wore my silicone all the time, like there was not a day that I didn’t wear it, a minute, apart from when I was washing. I would massage, I went to acupuncture, I took all the vitamins, you know, got a massage gun to… So, anything I knew that could’ve helped, I’ve done it.

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There were additional issues facing those who had lost a part of their body because of burns. Some now used prostheses, walking aids, a wheelchair or prosthetic limbs.

Gary had his lower leg amputated as a result of the burn and now uses an artificial leg.

So, a lot of the times it’s like I’ll put on my half-alignment and then two socks over my half-alignment and then put me stump into my leg and then it’s a nice secure fit. But then, say I might be walking from here to my car or something and then by the time I get to my car, it’s too tight so I have to take a sock off and it’s-, that gets a bit like “Oh bloody hell” but it’s just what it is, isn’t it?

Because it was my consultant who actually put me in touch with somebody at the university that dealt with bionic limbs and things like that. And there was talk of him trying to make a limb for me that was more comfortable but, uh, at that stage, I was, I had a really big bulky limb at the time and, since then, I had a carbon fibre limb from my leg hospital, which has made my life so much easier to get around, in regard to pain and things like that. Although my limb still does break down due to my scar tissue on my limb. It’s just the weight difference, it’s unbelievable.

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Raiche found that her balance was affected because she is missing one ear and the toes on one foot. She also found it difficult finding suitable shoes.

I always used to fall over and bang my legs and stuff when they were healing because I had the worst balance in the world. It doesn’t help where I’ve got, like, no toes on one foot, so that doesn’t help with balance. And then, I’ve only got one ear and apparently that completely throws you off and all! So, I was forever falling over, creating new injuries and new scars to add to my collection.

Also with shoes, because I don’t have toes on one foot, for example one foot is a size 8 and the other’s a size five so that’s a nightmare in itself. I’ve always got to wear two pairs of socks on my little foot.

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Coping with sun and temperature changes

People spoke about how direct sunlight can be very damaging to burnt skin because the skin is already so sensitive. Jeff said that if his scars get sunburnt, he feels like they are “burning” again, and this makes travelling abroad difficult.

For this reason, using sun cream was an important topic for the people we talked to. Jessica told us that she applies sun cream to her daughter’s skin all year round to avoid sunburn.

Saffron uses Factor 50 SPF sun cream and tries to keep her burn covered. This way, she can still enjoy going to the beach.

With sun exposure, I do live near a beach so I’ve always enjoyed going to the beach and making the most of the warm weather, but I just try to do that in the safest way as I can possible. So, I’m always topped up on factor 50 and I try to keep the burn covered, even though I still wear a bikini. So, you know, I’ll go to the beach in a dress, and I’ll lay on the beach in my bikini, but I’ll tuck the dress in over the scar so that it’s not in direct sunlight. And I guess in my head that way, it’s best of both worlds. You know, you’re still getting to enjoy a nice day but also trying to protect that as much as I can. And of course, if I was to go on holiday or, you know, to a foreign country where it’s a bit hotter, I try to not be in direct sunlight within the peak times just because it can-, wouldn’t want to burn the scar at all. But I haven’t done that up until yet so I do find that, you know, keeping regularly topped up with factor 50 and trying to cover it where you can, helps a lot.

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Sinead told us she is very cautious of her daughter spending time in direct sunlight.

She wears sun cream all the time anyway, we have had incidents before where emollient has been applied and she’s been let go out play, whether she’s in a playgroup or school or whatever, they’ve let her go out and play and she’s got quite badly sunburnt, because a lot of these emollients are oil-based. So, she now has a-, we’re very strict with sun cream, so she wears it winter time, summer time, she’s got burnt all times of the year on days that you wouldn’t expect somebody to get sunburnt. So, she always wears sun cream, always wears a hat if she doesn’t have a wig on, so yeah, so we’re very, very cautious with the sun with her. Very like, extra cautious, so, yeah, that’s probably another element where you have to kind of think a little bit ahead. You know, we’ll ask them in school “What time is she going out to play today because she’ll need to have cream on” to avoid a situation where she gets burnt.

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However, using sun cream was not always straightforward. Sunny weather is the “bane” of Tara’s life and she is “yet to find” a sun cream which doesn’t cause her problems. Marilyn worried that some of the chemicals in sun cream might irritate her burn scars.

As well as using sun cream, some people said they tried to avoid being out in the sun or to cover up as best as they could. For Sabrina, this meant not holidaying in sunny places for the first few years after being burnt. Gary said he always has to wear a hat. Jessica usually dresses her daughter in long-sleeved tops to further avoid the risk of direct sunlight. Holly, whose son was burnt, told us that he wears a full-coverage swimming costume to cover his burn and avoid sun damage.

Some people do not sweat from the area where they have been burnt because the skin and sweat glands have been damaged and this can sometimes be an issue. Tara said this can cause her to “overheat” because her body cannot self-regulate temperature. For this reason, warmer temperatures can be particularly difficult.

Tara finds hot weather and exercising “stressful” because her scars don’t sweat.

When I get really hot my scars don’t sweat – I don’t sweat from my scars so my body can’t self-regulate my temperature, so when I’m exercising, I can overheat very easily. I hate the hot weather because I just massively overheat and I find it very stressful and I feel very unwell in the hot weather because, you know like 30 degrees, my body is just not regulating itself and it’s just… Yeah. So, there are drawbacks, I mean, I don’t want to say drawbacks because it’s not really a positive/negative thing, but you know, there are less positive things to having scars. But, you know, do they affect me enough to stop me doing what I love doing? No. I think the only times that’s happened is after surgeries and in recovery from treatment from surgeries, obviously there will be things you can’t do.

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Kate said that changes in temperature can cause her scars to itch.

I think it changes with the weather so if it goes from being a bit colder to being quite hot then it will be itchy and, in the same way, if it’s just really cold all of a sudden, it will be slightly itchy. But I guess hot weather more so but any sort of changes it can be. But extreme changes, so like when we have a heatwave and it goes really cold for a couple of weeks it will be a bit itchy and then, like, other times where, if it’s been like alright temperature and it gets really, really hot all of a sudden, it will be itchy then as well.

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Burn injuries can also cause discomfort when the weather is cold. Tara said that “when it gets very cold, my scars tighten up. I notice that more with my hand, my hand just kind of freezes up in like a claw position”. Raiche said that, in colder weather, her feet go “numb” and she “can’t actually feel them”. This would sometimes cause her feet to get “really sore” or rub against her boots, which damaged her skin. As well as struggling to cool down when she is hot, Saffron finds it difficult to warm up when she is cold.

In addition to the practical impacts of burn injuries on everyday life, emotional impacts and the influence on body image were also important for the people we talked to.

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