María

Age at interview: 33

Brief Outline:

María has had urinary incontinence since her early twenties. She hasn't seen her GP about incontinence yet and worries about being advised not to have children or not being taken seriously. María currently keeps extra clothing on hand to manage leakage.

Background:

María is a Ph.D. student and teaching assistant who lives with her partner. She describes her ethnicity as Latin American.

Condition: urinary incontinence

More about me...

María has been experiencing urinary incontinence since her early twenties. She noticed that urine would leak when she sneezed. She worries about smelling of urine, which is a “horrible feeling”. It took María several years to acknowledge what her problem was. Looking back, she thinks that living with bulimia may have caused “a mechanical issue” that put pressure on her bladder. María thinks that it took her longer to confront her incontinence issues because of needing to come to terms with her eating disorder.

María feels that she doesn’t “need a doctor to have a diagnosis”, as she already understands that she is incontinent. Her mother has similar issues, so María was aware of what incontinence was when her symptoms began. María moved from South America to the UK a few years ago to study at university. She has accessed NHS care for other health concerns, but doesn’t want to see her GP about incontinence yet. María worries that she will be warned not to have children to avoid worsening the incontinence. Recently, María had to terminate a high-risk pregnancy. This experience was “very traumatic” but strengthened her desire to be a mother in the future.

Currently, María is managing her symptoms and trying out alternative medicine treatments. She previously used incontinence pads, but worried about the hygiene and smell associated with these. María now relies on keeping extra underwear on hand, which has been easier while working from home. She has tried out alternative treatments like herbology, and would like to try acupuncture in the future, but cannot afford these long term. María has not pursued NHS physiotherapy based on a previous negative experience with seeking care for back pain. She is aware of the possibility of surgery, but hasn’t researched this much.

In her daily life, María’s incontinence makes her uncomfortable and “really self-aware”. She appreciates being able to work from home, as she is currently able to change her clothes whenever. María thinks she has become “a bit like an obsessive compulsive” about changing to avoid any potential smells. She notes that women are under extra pressure to smell nice, and are more aware of their bodily fluids because of menstruation.

María thinks she has been avoiding reading about incontinence, as she considers it “shameful for me”. She thinks that the “perfect beautiful thin athletic” women she sees on social media impacts how she sees herself. Living with additional issues with back and shoulder pain has made María “feel less of a person”. She finds incontinence to be an additional “tag of shame”. María has been able to talk to her boyfriend about her continence issues, but avoids telling anyone else. In her relationship, she sometimes worries about being physically intimate.

María has had mixed experiences with navigating the UK healthcare system. She has noticed that symptoms need to be more severe to “pass the barrier” of the GP. María was surprised when international student friends told her to cry or exaggerate to get more services. She prefers not to put on an act, and questions why this is normal. When seeking care, María thinks she may be treated differently because of being “transient” as an international student. At times she has struggled to know what certain words mean. She notes that many international students don’t know that translators are available.

To improve healthcare for women with similar conditions, María thinks doctors should be patient, listen carefully, and consider multiple forms of treatment. She has found that doctors often pay more attention to protocol than the patient that they’re talking to. María also thinks doctors could better support patients by having accurate visual representations to gauge the level of incontinence. In the general public, Maria would like to see people talk more openly about incontinence to reduce the shame around it. María wants women to know that there is no shame in incontinence, and that it can be manageable. She advises that something going wrong with one’s body is “not the end of the world, even when it feels like that”.

María feels ashamed because she feels that she is “not perfect” or “not enough” anymore.

Shame, you know, like I think like it’s a tag of shame I have in my poor head, you know. It makes me feel, it has an impact in making, making me feel kind of, how to say? …Kind of not perfect, you know and again, it’s something we discussed, you know like yeah, I’m not perfect, I’m aware of that. But it’s still I think there is some voice deep inside that is saying like you are not right, you know, and I think that’s the, the, the conversation that is very subtle because again I don’t research about this, I don’t, I prefer not to know. But I think the conversation in the back of my mind is like you are not right, you are not perfect, you are not enough, you are not , and it’s such a small thing you know because it’s not, again it’s not something that disables me where like I cannot walk anymore, but it’s, it has such an important impact, you know in, I consciously don’t give a space, don’t give it a space, but unconsciously of course I’m giving it a space. Like there is something going on, there is some conversation there that is, bah.

María self-diagnosed her urinary incontinence. She doesn’t feel the need to see a doctor for the diagnosis and doesn’t think she would be offered any further help in terms of treatment or referrals.

I think also I started going to the gym before the pandemic, so I had, I was having more movements, more fluids coming on, so I would say like it’s been a process of working with myself you know, but also like getting to, to know me more. I think so. I think so, I mean like I don’t remember the day like I said, “Like oh yeah, it’s this.” But I remember that there was this process of saying like, “Yeah, it’s this.” And as I said I didn’t go to a doctor or anything because I don’t need a doctor to have a diagnosis.

 

María prefers to bring a change of clothes with her rather than wear a pad.

I used to use pads, pantyliners I think they are called, but then I found myself like very uncomfortable because they will become smelly easily. So I stopped using them because, also because they make me sweat more in the area, so I feel like it’s not hygienic. My mum uses, for instance I knew about them because of my mum. But then over the years I just dropped them, I don’t like to use anything. If, when I am with my period it’s like I use pads of course, but it’s really challenging because I can get infections, it gets sweaty, so I prefer not to use anything. I just like change my clothes, working from home has helped, you know like I change my clothes whenever I need them. But when I am working from office, yeah, I cannot change my clothes. But for instance if I am going one day, if I am, I know I am going somewhere for one entire day, I am going to bring a couple of panties, like in my bag, just in case you know because I never know, and I don’t want to get all like smelly, so.

María, who is studying as an overseas student in the UK, says that language can be a barrier in healthcare for those whose home language is not English.

In my first year I think like, well even till now you know to be honest, like sometimes I go to the GP and I am able to fully communicate what’s going on with me, but sometimes they use some words that I don’t understand, and I’m like, “Yeah, yeah.” But it’s part of like living in another country, you know, and there are words that you will never understand. And I mean I make my peace with that. But that has never, that has never been a barrier, like it’s there of course because they would say like I don’t know, I remember where, when I got pregnant it started because I got thrush, and the doctor says thrush, thrush, you know, it’s like I’ve no idea what she’s talking about. No idea until she prescribed the medicines and then I read what they were for. So that could be a challenge for sure. I think like if you say urinary infection, it’s easier to understand than thrush, thrush like, I remember even, I, asking my boyfriend can you listen please, I recording, and he was like, he didn’t know of course, so well I have no idea what this woman, of course I knew what was going on with me, but I couldn’t you know like, I couldn’t even translate because I didn’t know what, what was that. So I would say like that could be something but I wouldn’t tell you how to overcome it you know. Having maybe this type of appointments, like with a camera, maybe would it be easier, you know because you can put a software and you can have close captions and research what the person is saying in that moment, you know. That could be something maybe.

María, who has urinary incontinence, has been very aware of what she smells like since she was a child and feels ashamed if she smells “bad”.

Well I think it affects me a bit of being like being self-aware, you know, in how being self-aware on, on how my pants look. You know like I feel like very uncomfortable every time I, because it happens throughout the day I don’t notice, but it happens you know. And then in the end of the day I come home and I am smelling horribly and, I mean I would say like it doesn’t have an impact in like, I don’t know I’m walking and I have no, you know it’s not like, it’s not disabling you know. Well maybe it’s coming from thinking of my research, it’s not that it does disable me, but it makes me feel ashamed most of the time, you know. 
 
I think like between 8 and noon, 8 in the, 8am and noon I am fine, but after that if I, if I have to stay in the office I am feeling dreadful. Like I stay sometimes because I have to work, but I, I am not comfortable to be there. And I tend to take, to shower twice a day if this is really hard if it’s been a day that I have been like doing a lot of things. So yeah I think it makes me feel ashamed you know, more most of the time I’m aware of me, I’m aware of my body, fluids of my body, smells. Yeah, so I would say that.
 
Well I think I don’t know, we don’t like, I think we don’t like bad things or smelly things; you know. Like I think it’s a general self-awareness that things that are smelly or bad are not nice, and things that are beautiful and smell like roses are nice and you know. I think it’s very genderish, or gender, a gender thing. Because I remember when I met my boyfriend he would be a bit smelly you know, and I was like “Have you noticed you’re smelly?” And he was like, “No.” And I was like, “How you cannot notice?” You know. I notice like, even if it’s like minimum, I notice what, how I am smelling you know. And I mean it’s a silly example, but my whole point is like I recognise me being really aware of my smells and I’ve had conversations with my friends, like, about like, I don’t know you think some type of deodorant or whatever, you know. So I think it, it goes in that direction. In my case I, I feel like since they, since I was very, oh since I was a child actually, I remember in the school not wanting to, when I was a child I remember not wanting to take a shower. I don’t know why, or how it happened, and then my mum told me like, “Oh but you’re smelly, you know.” And I was like, and then I would be aware of that, since I was like six or seven, and since then I’ve been always aware of like smells. And it’s like a big deal for me.

 

María wants others to know that there is no shame in “peeing yourself” or in having any health condition.

Well my positive key message would be there is no shame on that. There is no shame on, on peeing yourself because it’s literally peeing yourself. I think we think peeing yourself is only something for a kid who is five you know. But when you are in your twenties, thirties, forties and above it happens. And I think that’s the main message, you know there is no shame on, on peeing on yourself. I think it’s [sighs], it’s difficult to live with but it’s manageable, it’s not a death sentence you know. And, and I think, I think it’s important to accept slash recognise that our bodies smell like anyone’s body, not only ours, you know. And there is no shame on, on the smell, on being smelly or, but I think that there is no shame on peeing yourself although I struggle with that, I think like there is no shame on that. It happens and if it didn’t, if we are lucky enough to get to be very old we will be through that even stronger, you know, when we are very old so. 
 
I think it’s important to recognise that our bodies are, how to say? Our bodies, like our bodies work the best they can do but sometimes they can’t, and it’s fine you know. I think the problem is that we recognise, we make this and this may become more from my researcher side than from my personal side, we make this assumption that disease or illnesses mean disabled, even when you are not disabled, you know. But I think or, not, not disabled actually it’s disease is the same as non-able person, and this message of being non-abled, not being perfect, not being yeah perfect to, I don’t know, social media standards are really harmful. So I think like having something going on is not the end of the world, even when it feels like that. So I would say it goes in that direction. There is no shame on, on pee yourself but also there is no shame on, on having something that, or having your body not working as other bodies you know.