Mehar
Mehar lives with recurrent urinary tract infections (UTIs) and urinary incontinence alongside chronic conditions which affect her connective tissues and immune system. She has struggled to receive effective care, and at times has been told that her problems are more psychological than physical. Mehar underwent Botox bladder injections and is currently on long-term antibiotics.
Mehar is not currently employed and is planning to start a master’s degree. She has an interest in advocacy work. Mehar lives with her family and describes her ethnicity as Afghan Sikh.
Conditions: recurrent UTI, urinary incontinence
More about me...
Mehar lives with recurrent urinary tract infections (UTIs) and urinary incontinence associated with Ehlers-Danlos syndrome (EDS), a connective tissue disorder. She initially noticed the symptoms of EDS in her childhood and dealt with repeated injuries and infections. At the time, her GP suggested that her problems were psychological and referred her to a psychologist. Mehar felt that she was being told “it’s all in your head” and that her physical conditions weren’t properly investigated.
Once Mehar started her period, the pain was “horrendous” and this made her unable to walk or move. She repeatedly developed UTIs seemingly without reason and found that they did not go away with antibiotics. These infections varied in severity, but typically started with urinary frequency followed by burning and aching sensations. She repeatedly tested negative on her dipsticks for UTI, and based on her experiences as a child, she wondered if this was also “in her head”. Mehar also noticed mild urinary incontinence. She ultimately chose to seek private care, feeling that doctors were insinuating that there was “nothing wrong”.
Through a family friend, Mehar was recommended a private specialist in orthopaedics. Mehar was quickly diagnosed with Ehlers-Danlos syndrome and referred on to a pulmonologist (respiratory specialist), cardiologist (heart and blood vessel specialist), and neurologist (brain and nerve specialist). She was further diagnosed with autonomic dysfunction and told that it was likely that she also had endometriosis (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes). A private urogynaecologist tested, and confirmed, her recurrent UTIs. Mehar learned that dipstick tests frequently do not work on patients with EDS, and that they need urine culture tests instead.
Mehar recently underwent a cystoscopy and Botox injections to help with her bladder spasms. The cystoscopy discovered signs of infection embedded within the lining of her bladder (biofilms) and bladder damage, which in part explained Mehar’s recurrent UTIs. She is currently taking long-term antibiotics and considering having bladder instillations. Since Mehar has a range of conditions and symptoms, it has been especially challenging to get treatments to “fit together” while wondering whether it will “backfire on something else”. Through the repeated use of antibiotics, she feels that her organs have been damaged, and she is worried about the potential of antibiotic resistance in the future.
Mehar has appreciated being able to “work together” as a team with her private doctors but struggles that this is a financial burden for her parents. She feels that the “NHS isn’t open to people like me” with complex and chronic health conditions, and that she “didn’t have a choice” other than to seek private care. Based on the severity of her conditions, her family support her and feels that “we have to afford it, one way or the other”. Mehar tries to make her care more affordable by spacing out appointments and having services done through the NHS where possible. At times, she feels like managing her care is a “full time job” of communicating between various doctors and attending appointments.
Living with chronic illness has at times been “quite lonely” for Mehar. She was initially advised not to attend university but refused to accept this. Mehar has now graduated. She is unable to work full-time but is actively involved in patient advocacy through charities and online blogging. Through the online chronic illness community, she has been able to learn more about her conditions and now feels that “I’m not isolated and I’m not alone”. Her family and friends are supportive, but at times Mehar feels that she is misunderstood or judged by others. In some cases, she has ended friendships over a lack of understanding for her conditions. Her current partner is supportive and cares for her “wellbeing”, rather than focusing on some of the challenges of living with chronic conditions, such as physical intimacy. Mehar prioritises her mental health and tries her best not to “let my illnesses take everything away”.
Mehar has found that talking about her conditions can come along with misconceptions or not being taken seriously. When speaking to others about her UTIs, she has faced the “question of cleanliness” and been given unsolicited dietary and lifestyle advice. She feels that people would not have the same concerns had her infection been in her ear. For a while, Mehar “thought it was a me problem”, until learning that recurrent UTIs were quite common in those with EDS. Mehar has also struggled with her conditions being “invisible”, and therefore dismissed by both health professionals and peers, based on her outward appearance. She has at times found herself “wishing for things to show up” on tests to prove that she is actually sick.
To improve health care for people like her, Mehar would like to see changes to medical services and attitudes. She feels that the NHS needs more funding alongside changes to clinical education, including a base of knowledge around rare conditions. Mehar goes into her appointments with a document of her health information, as she knows from experience that many clinicians will not know enough about her conditions. She encourages clinicians to listen to their patients, avoid “gaslighting” them, and to consider rare conditions an opportunity to continue learning. Mehar advises women “not to be ashamed” and to keep in mind that there are causes for UTIs beyond being unhygienic. She encourages fighting and advocating for oneself. To the public, she emphasises that “being supportive and listening is sometimes all that is needed”.
Mehar has bladder problems and feels “a bit of a burden” when she is out with friends. She finds her friends don’t always understand why a UTI is causing her so many problems.
Mehar has bladder problems and feels “a bit of a burden” when she is out with friends. She finds her friends don’t always understand why a UTI is causing her so many problems.
Again it’s isolating, I have to miss out on going out with friends and then I feel quite lonely because my friends go and do things and I can’t do it and then when I am out with my friends I feel like, a little bit of a burden because, you know, I don’t want to keep complaining that, “Oh I’m in pain and I need to sit down or I need to go find a toilet,” when I went five minutes ago, and I feel it’s just not something that because sometimes when you say to people oh you have a UTI, it’s just like, ‘it’s just a UTI, people, women get them quite often and why is it a big deal?’ and I don’t think there’s enough information over the recurrent UTIs and how bad UTIs can get and how painful they can be when they get, you know, when they become severe and I don’t think people realise that it can make you a bit bound, but, you know, you just can’t move and it’s not your problem, it’s just the way your body’s reacting. I’ve had quite a bit of issues with that, like trying to explain it to my non-chronically ill friends. I have some that are really understanding and then there’s some who just don’t understand why a UTI is causing problems like that when people get UTIs on a daily basis, yeah.
Mehar thinks there is often an assumption that private healthcare patients can easily afford it, but this is not necessarily true. She tries to find ways to reduce costs, such as by getting some tests via the NHS.
Mehar thinks there is often an assumption that private healthcare patients can easily afford it, but this is not necessarily true. She tries to find ways to reduce costs, such as by getting some tests via the NHS.
I think people will think and I’ve seen it on my like chronic illness community on Instagram I think people think that if you see private doctors, you’re loaded with money but that’s not the case.
I didn’t have a choice, it wasn’t a matter of, ‘Can I afford it?’ It was, ‘we have to afford it, one way or the other. We have to pay for it,’ and that’s what, you know, that’s what my parents said, they were like, “if we were to put money first, there’s no way we can afford it but we have to put you first, you know, and we have to, we just have to figure a way around it and we just pay for these things and it has to be done,” and that’s what we did. Just went on from one to the other and I tried to space it out as well, like appointments and tests weren’t happening all at once. It was, I tried to space it out as much as I could to give some time.
I also feel like, you know, like because I can’t work and it just makes me feel bad that my parents are having to pay for it when they can’t really afford it because it’s a lot of money, like I don’t think in this day and age anybody can really afford full private care without insurance and without, you know, out of their pocket completely. It’s a lot of money, especially when you’re starting out and you have to have all the tests to figure out where, you know, where you stand and things. Yeah, and I just feel really like I feel bad, you know, that my parents are having to pay for this and I can’t do anything about it but then I did try to, sometimes when my private doctor would give me a list of bloods to do, I would call my GP first and I would say, “What out of this can the NHS do? What do you think I can get done?” and then my GP would, you know, give me some tests on the NHS which would help because bloods are really expensive privately.
Mehar had seen a GP many times about UTI, but when her dipstick tests stopped showing infections, her GP only offered psychological therapy. This left her questioning herself.
Mehar had seen a GP many times about UTI, but when her dipstick tests stopped showing infections, her GP only offered psychological therapy. This left her questioning herself.
I can’t remember when my UTIs started just because I’ve had chronic infections since December 2013, and they’ve been random so I can’t pinpoint where the UTI specifically started from and I think I’ve also mushed it together with the periods because it’s all in the same area, so everything’s mushed together. But I would say I think I would start with the GP because that primary care right my first GP that I had. Again I would go in, do my urine samples and then they would just dipstick it and be like, “There’s nothing there and you’re fine.” Then I would be so confused because I had all the symptoms and ‘Why is it not showing up, is it because there’s nothing in there or is it just in my head?’ because that my old GP had a tendency to tell me that I need a therapist and not a consultant since I was eight years old that was her thing. Anything I went to him for he was like, “You need to see go and see a psychologist,” and he’d just refer me for therapy instead of doing further tests which also put me off because when you’re rep-, when you’re told on a, you know, regular basis that it’s in your head, there’s nothing wrong with you then you start to question that as well, especially when the dipsticks are coming up wrong, I just kept thinking maybe it is in my head because I went and I did the test and even if I have the symptoms but nothing’s showing up so maybe it’s just in my head and if I stop thinking about it it’ll disappear.
Mehar has urinary incontinence, bladder pain and problems with UTIs, as well as other health conditions. She sees different specialists for these, and often feels caught “in the middle” of managing multiple health problems.
Mehar has urinary incontinence, bladder pain and problems with UTIs, as well as other health conditions. She sees different specialists for these, and often feels caught “in the middle” of managing multiple health problems.
I think that’s one of my main problems like with my doctors as well because they never know that if they start something will it backfire on something else. Another thing that’s quite difficult is because I have all these conditions, I have all these separate doctors and they have to, you know, figure a way around things together rather than separately but in private practice that’s quite hard because they don’t communicate with each other and I’m the middle, you know, point person and I have to go from one to the other to say, “This is what Doctor A did, this is what he want,” and then Doctor B would say, “No but that’s not what I want,” and then back and forth, back and forth until someone comes, you know, to some sort of conclusion together. Yeah it’s quite, do you know, sometimes it’s just, sometimes I really think like ‘what if I just stop it all? What if I just stop my medicines and just sit there and don’t do anything, no doctors?’ you know, but obviously that’s not possible. I don’t really have a quality of life yeah, it is really difficult. I’m not a medical professional, I don’t have a degree but I spend my life in hospitals and medical admin and there’s so much that I know that doctors aren’t trained in, you know, my former manager said that to me all the time, she says, “You have knowledge that they don’t because they’re not trained in you and you have to use that.” So I don’t know it’s I’m like in the middle of being a doctor and not being a doctor, I’m just slapped in the middle, so yeah, it’s just difficult navigating multiple things all at once.
Mehar has found it very stressful trying to get GP appointments since the Covid-19 pandemic caused changes to services.
Mehar has found it very stressful trying to get GP appointments since the Covid-19 pandemic caused changes to services.
Yeah I think so especially since Covid, trying to get through to your GP is becoming hell because they don’t, I don’t, I dunno about all GPs but my GP and I’ve heard other people mention this too but you have to call at 8am in the morning if you want an appointment and you can’t prebook appointments like you were able to and that’s really difficult because sometimes it’s hard to wake up that early or I’m just in pain and I can’t be bothered even if I need it, I just, you know, sitting on that line for hours. Sometimes you call and you’re like 15th in the queue and by the time they get to you it like, “No appointments left sorry.” It’s like, “Okay”. That’s why I tried to email, you know, I tried to email them saying, “This is my problem and I know it’s hard to get on the phone and you don’t have enough appointments and things, can you not read my email?” and then you’re like, “No please call us?” and I just repeat the same cycle because ‘How do I do that?’ you know, so I really do try sometimes. I know my GP, they want us to call at 8:30, sorry 8:29 so I just keep pressing the ring button until I get through to somebody. It’s just really stressful.
Mehar was able to get more tests when she had private care. She thinks that NHS doctors would do more tests if they were not underfunded.
Mehar was able to get more tests when she had private care. She thinks that NHS doctors would do more tests if they were not underfunded.
Sometimes doctors will look at you and say, “Oh there’s nothing actually wrong with you, you can just be on your way.” Even after all the diagnoses you have and then there’s some who just say, you know, “I don’t wanna deal with this, you’re too complicated.” I’ve actually had doctors, NHS doctors say that to me, they’re like, “It’s too complicated, I’m not dealing with it.” So, I don’t know if that’s just NHS and private or a general thing like I don’t know what’s that about but yeah like I also have noticed that then relating to that, they’re not willing to go above and beyond, they’re not willing to look into things. Like I went to this gastro doctor and she was really dismissive, like I went to her after my private doctor said, like he doesn’t specialise in gastro but he pointed that, you know, this and this might be the issue and you need to get a gastro to check and so I went to the NHS and I got an appointment and I said this and this is what my consultants think, “Can we test?” and she just laughed at me, she just, “Nope, other people have this problem and I don’t wanna test for it.” I was just like “Oh okay,” then I went back to my private, and he goes, “No we’re running these tests because that’s wrong because your symptoms aren’t normal,” you know, I don’t know. I feel it does come down to lack of funding because they can afford to do these things and the NHS can’t afford to run tests. They also can’t, they don’t test for a lot of things. They give a blood to a pri-, if you go to your GP and say, “I need a blood test because I have these symptoms,” NHS blood tests are quite basic compared to private blood tests, sorry, private will look into everything deeply where the NHS doesn’t, they don’t look into anything and that’s also what causes a delay in diagnosis because they don’t have the resources. Some aren’t, some willing to do it and then because they don’t find anything their initial report it’s like, “Oh well you can go away now.”
Mm and do you think that it that it comes down to finance and resource?
Yeah definitely, definitely if the NHS had more money, I do believe they would do more than they’re currently doing.
So, I don’t think it’s entirely the NHS’s fault. I think the main problem is that they’re underfunded, you know, they don’t have money like private practice does to throw around on tests and things, they have to be really careful on what test they do, on what person and how much it costs and is it worth it? I think they really have to sit there and think. Whereas, private practice, you have a problem and they’ll be like, “Oh we can do this test easily,” because they can afford to do it. Whereas because the NHS is one big, obviously one big bubble of and there’s so much going on in there, one doctor can’t sit there and say, “I’m gonna do the test” because he doesn’t have the power to do that. It depends on the hospital, it depends on funding, it depends on other, if there’s other patients who need it more and things and private practice, if I go to one doctor and say, “Let’s do this test?” They’ll be like, “Okay, come tomorrow and we can do it.”
Mehar feels that healthcare professionals need to think “outside the box” and consider what might be causing ongoing symptoms.
Mehar feels that healthcare professionals need to think “outside the box” and consider what might be causing ongoing symptoms.
I think it starts in med school so only the curriculum for med school needs to be improved. The whole ‘listen out for horses and not zebras,’ has to be scratched up because I think there’s more the zebras out there now that are coming up and the medical world isn’t ready for us, they don’t know anything, they’re not trained in us. They’re not even taught our conditions. They don’t know anything, they just look at us just with blank faces and, you know, I actually spend a lot of appointments in there explaining my own conditions to them. Then they google things in front of me and they’re so fascinated and it just makes me sad that you spent ten years of your life in med school and residency, but you don’t know half of the things you should know.
Mehar says that healthcare professionals have tried to make her feel that her symptoms are in her head. She thinks that better communication is key to good healthcare.
Mehar says that healthcare professionals have tried to make her feel that her symptoms are in her head. She thinks that better communication is key to good healthcare.
Yeah so obviously first and foremost is listening to the patient, not dismissing them, not gaslighting the patient. I know that even, I’ve had experiences where I’ve had my diagnosis from my private doctors done and they’ve had an incident in A&E or with my old GP or something and having, I have this on paper that I’ve had these diagnoses and conditions and I’ve got these medications and still one of the doctors said to me, “No these aren’t real, this isn’t a real diagnosis, there’s nothing,” and that really shocked me because, you know, you can’t just go around gaslighting patients especially when they have the conditions and they have the doctors and they have the medication. So, I think it’s just really, really important for doctors to understand that that just because they don’t know what it is or they don’t understand it doesn’t mean that everyone else is wrong about it.
It’s also important, I don’t know, actually the way sometimes doctors talk to a patient can be quite rude and I feel like when you’re going through all these things, you know, you have all these symptoms or conditions and you just, you don’t know what to do, you know, you’re in pain and things just aren’t going right, it’s just doctors need to empathise and listen instead of just being rude about it and just laughing and things so that’s, you know, I think it all just comes down to a communication, how to, how to effectively communicate.
Mehar talks about the benefits of an online community and says “it’s like having your own little support group”.
Mehar talks about the benefits of an online community and says “it’s like having your own little support group”.
Yes so that’s been a very big deal for me because I found people I can relate to and who can relate to me and it’s like, I’m not an odd one out and I’m not isolated and I’m not alone. There’s other people who have this problems and they feel the way I feel and like with my other friends I would have to explain things to them and sometimes they’d don’t get it fully believe and they’d just say, “But you can do this but you know, just do it,” But then if I speak to my chronically ill friends they just get it and then they advise me accordingly. I feel like that’s a big difference and then we can discuss, it’s like having your own little support group I guess, even if I don’t talk to an individual person, I can just post on my stories, like at my appointment did this, this is how my appointment went, this is how my tests results came, this is what I’m doing and then I see other people’s as well and it’s just really useful and then we talk to each other about our treatment options and things that we can do and it’s just been like, it’s nice, it’s just quite nice, even though it’s only over the internet and I don’t see them in person, it’s just nice knowing that I have found them there and I have, you know, people to go to when I need to and people that can help me out and I can help them out as well so, you know, it’s really nice.
Mehar describes ‘gaslighting’ as “making somebody believe that something’s not true, even though it is”. She has experienced this with some of her urogynaecological problems.
Mehar describes ‘gaslighting’ as “making somebody believe that something’s not true, even though it is”. She has experienced this with some of her urogynaecological problems.
So essentially gaslighting is telling somebody or making somebody believe that something’s not true even though it is. So, I say I present with my condition from, and the doctor says to me, “No, no it’s in your head, there is nothing wrong with you. This is not a condition and you’re completely fine, you don’t even need to” so the doctor would be gaslighting me and making me believe that it is in my head and there is nothing wrong with me. It’s horrible, you know, you can’t throw your patient to psychology every two seconds, you can’t just throw your arms up, you know, you have to help them and give them proper care. Even if you don’t understand something, that’s fine, there’s no shame in that. Just ask questions or do your research because gaslighting I know, I’m grateful that I haven’t had like severe cases or anything traumatising, but I know that people have been traumatised by doctors and things through gaslighting which is just really upsetting because doctors are supposed to have been helping us.