My Musings on Mother’s Day

This possibly won’t be the most coherent post but I’ve got a few thoughts which need to vacate my head so I can sleep. And I’m too lazy to find my glasses so there will probably be some typos!!

I’m not a fan of massive proclamation posts for Mother’s Day, I just find them a bit unnecessary. Plus my mum and I aren’t friends on Facebook (if I want her to know about my life, I’ll speak to her!) so she wouldn’t see it anyway. Each to their own, but some are too OTT and I get the feeling they’re more for showmanship than anything else. So I was all geared up to do a bit of eye rolling at the super soppy posts.

Except this year, there were more posts about people saying how they were thinking of other people who found Mother’s Day hard/ how hard they were finding Mother’s Day. Again, not my thing, but nice sentiment I guess. But I found it sad that some mums/children felt the need to include this statement in their status about their Mother’s Day. Some were almost apologetic about the fact that they had kids/a mum to celebrate with. Why though?

Maybe it’s my age. There are quite a few friends in my age bracket whose mums have died. There are also quite a few friends who are mums themselves or people who want to be mums but haven’t got pregnant (yet). While I empathise with those people, I feel bad for other people who felt they couldn’t celebrate in their happy day for fear of upsetting someone else. Why shouldn’t you post something nice your kids do on Facebook?

It’s great lots of people are thinking of others and trying to be sensitive. I couldn’t work out why it didn’t sit well with me, that I was seeing more posts commiserating/offering sympathy to others than celebrating mums. It wasn’t so much the actual words- on the surface it seemed nice, and from 90% of people, I reckon it was probably intended to be nice to those who find it a hard day. But I also don’t like the idea of people who are happy being made to feel like they shouldn’t be happy. It’s one day about a specific group of people, mums, and sometimes you have to just let others revel in their happiness for the day. Like always being a bridesmaid at weddings. You’re a horrible person if you turn that day into about you being single! The percentage of people who find Mother’s Day upsetting is less than the amount of people who want to celebrate it (on my feed), but once one person starts offering commiserations, everyone tends to follow suit.

Then I thought about it in a different way. I spend most of my life looking at people doing things I can’t do anymore on Facebook. Seeing people have exciting aspirations and making plans. If I tell you the first 5 things on my Facebook feed right now, they’re:

– travel plans

– baby photos

– my husband’s forthcoming choir concert

– pregnancy announcement

– losing weight achievement

If I wanted to, I could begrudge every single one of those because all are out of my reach because of my illness. Do people post with the caveat of ‘I’m excited to be pregnant but I’m so sorry to tell everyone who might find this news upsetting because they can’t get pregnant?’ Or ‘I’m sorry to say that I’ve got some exciting travel plans because I know some of you can’t travel’. No. Because that would be stupid. And if I pointed this out to anyone, the response would be ‘yeah but it’s not their fault you’re disabled’. And it’s not the poster’s fault. The responsibility would be on me- if I don’t like what I see on Facebook, I shouldn’t look at it. It’s my problem. If someone came round my house and only talked about things like that and showed no interest in me, then that would be different. But online, you have to take a bit of ownership over what you choose to look at. You can be happy about someone else’s joy but still feel sad about your own circumstances- you can’t begrudge people happiness.

So why doesn’t that work with people on Mother’s Day? It’s totally fine to feel sad for whatever reason, but why do other people need to show awareness of this sadness in their Facebook updates? There were some lovely memes going around about support, don’t get me wrong, I just feel like there was almost too much sensitivity shown today, when it could have been just about celebrating mums.

I’m saying this as a childless woman, whose friends have (mostly) had kids. I feel for people who found today hard, and I’m not saying those feelings are invalid and shouldn’t be heard. I think the issue for me is with the collective voice social media provides. There was one particular meme that got shared *a lot*. Why did everyone feel the need to share it? To show that they were thinking of other people? Because they felt guilty? Like I said, it was probably 90% shared with good intentions. But I think it’s sad if people feel like they need to moderate their happiness for fear of upsetting others, on a day which should be just about mums.

Why accessible healthcare is only fully accessible to the privileged

I’m privileged. I went to a good school, got a university education, found a teaching job as soon as I finished uni. I’ve been travelling, I’ve lived abroad and experienced different cultures. I own a house. Sure, I worked hard for all of those things, they didn’t come easily. But I was privileged to be in the position of being given the opportunity for all of those things in the first place. I live in a country where healthcare is (mostly) free and accessible to everyone, and the healthcare system here is up there competing with the best in the world.

But healthcare isn’t as accessible as you might think. There are huge barriers that exist in getting good quality care. *Unless* you’re privileged.

Privileged doesn’t necessarily mean you’re entitled and think you’re better than anyone else (although it can mean that if you are). It means you have experiences or rights that others do not. Someone said something to me yesterday and it got me thinking. They said ‘it’s a good job you’re intelligent enough to work out what the problems are before they happen and then are eloquent enough to be able to explain them to other people and get them to do what you need them to do’. I’d always assumed these were skills that everyone could have if they worked enough or tried hard enough. But that’s definitely not true. My illness means I struggle cognitively to function day to day, but that’s not the same thing as not having acquired the skills in the first place- some things I can do from muscle memory or reflexively because they’ve been drilled into me from a young age. Imagine how difficult it is to struggle cognitively but also have to try to work everything out or learn new skills for the first time, just to be able to access healthcare.

In terms of accessing decent healthcare, the biggest advantage is that I’m white and English is my first language. I don’t need an interpreter. I’ve seen too many times foreign people being ignored or moaned about or treated like some kind of second rate citizen by staff because they can’t understand or communicate. One Indian lady was being force fed meat when she was a vegetarian (for religious reasons), and the healthcare had the audacity to slag her off to us other patients while doing it. This woman was literally fighting the healthcare off. Her son came in and (rightfully) kicked off because no one had bothered to get an interpreter down for her to communicate that need to them and the staff had taken one look at her and decided they couldn’t be bothered. People don’t look at me and make stereotypical (and often racist) assumptions.

I’m literate and can (vaguely) organise myself. When you’re chronically ill, you get sent a lot of appointment letters and patient info leaflets. I can read and understand the info and I know how to manage my appointments (or at least my husband does when I can’t), which, in itself is a skill. It might take me a while or I need someone to help process it because I’m cognitively slow, but I learnt how to read and comprehend at school. Not everyone knows how to or is able to use a calendar or set reminders. Some people might not know what day of the week it is and they might not have someone else who can organise them and take them to appointments if they can’t get there themselves (eg the elderly). You don’t get asked your accessibility requirements, or at least I never have, because people assume, which is fine if you’re obviously blind or speak no English at all so it’s clear what your access requirements are, but if it’s more subtle or invisible, it’s a problem. The patient info does say about being able to access the info in other languages or large print or Braille, but it’s written in English (although that’s starting to change) and is only useful if you know where on the leaflet of indistinguishable words it is. Sometimes you get *a lot* to look over. Some people can’t read a lot.

I’m eloquent. Having attended a good school, I was taught how to describe or explain a problem effectively, how to listen to a response and counter argue if necessary. When I speak, I don’t have a broad regional accent. My teacher training taught me how to use my voice effectively to communicate in different tones, eg, I can make a complaint and express distaste without shouting. I don’t need to rely on swearing to convey anger. I can get people to see my point of view by knowing what questions to ask them to get them to rethink. So when I’ve been unhappy about my care in the past, I’ve been able to rectify it where other people might have just left it and not got what they needed.

I can do objective research and compare it with my experiences. Anyone can type symptoms into google and self diagnose with the first thing that comes up- providing you have access to the internet, know enough English… (see, my privilege came out there a bit!). But it’s thanks to my university education that I can research specific terms, work out if it’s from a reliable source, find other research like it, and not assume that every symptom I have ‘fits’ the box. Then, because I’m eloquent, I can communicate this well to my doctors, with the help of someone else. It doesn’t mean I find it easy, and my disability definitely makes it an arduous process, but I have acquired the skills to be able to do it. If I hadn’t been able to do good research and know how to argue my case, I probably would have died by now. How do other people manage with my condition if they’re not in my position? They usually end up in a coma before someone works it out. The other advantage is that I know exactly how my condition works, more than some of my doctors, which ultimately leads to good management of it. Just today, the news is reporting that an astonishing amount of asthmatics don’t know simple inhaler technique because they’re not being taught it. Yeah it’s in the patient leaflet, but most people won’t read it and don’t necessarily know that there’s a right and wrong way of taking an inhaler in the first place, so they won’t actively ask HCPs about it.

I can get to and from my medical appointments. Either my husband or a friend takes me or I can sometimes afford to take a taxi. A lot of people aren’t able to take public transport and don’t have people who can help them out. Taxis are expensive. You can get patient transport to planned hospital appointments, but you still have to a) know it exists and b) be able to arrange it. And, quite a lot of the time, patients are abandoned in doorways in wheelchairs waiting hours for patient transport with very few updates as to what’s happening. What do you do if you’re disabled and have kids? Patient transport won’t let you take them on board and even if they did, there’s nowhere for kids to be supervised by someone else while the parent gets treatment. Is it any wonder some people don’t attend appointments?

I know what I’m entitled to. Because I’m able to look it up and know that I might be entitled to certain things. For example, my condition counts as one of the few that qualifies me for free prescriptions (I live in England and everyone here has to pay £9 per prescription, unless you qualify for free ones). Before that diagnosis, I had a prepaid prescription card where I paid £2 per week and got all prescriptions free after that. No one told me I was eligible for those things, I think they hope people don’t know so they can keep making money. But I knew who to ask and where to look.

I learnt practical skills at school which means I can problem solve. Or at least identify a problem. Some people would find it difficult to understand why they needed surgery if they hadn’t been taking their pills. How does not taking one round, white tablet every morning result in pancreatitis requiring surgery? I listened to a doctor try to explain this to a man in the next cubicle once. To him it made no sense. But when he asked her to explain it, she couldn’t really describe it to him properly either, so it’s not as obvious as privileged people think. I can make the link between not taking my tablets and feeling poorly. Or I can identify what triggers my asthma. Some people can’t make links like that, no matter how logical it might seem.

I have a support system. I have friends and family. If I’m not getting what I need from the healthcare system, someone will step in and make sure I do. Lots of vulnerable people don’t necessarily have friends and family- either through old age, being neglected, illness isolating them…

Generally, people of my age experience problems in the NHS as a system because we don’t qualify for a lot of social care or funding eg I’d be expected to ‘get on with it’ if I lived alone but a child or a pensioner with the same illness/circumstance would be given carer support or adaptations made to the home. But being privileged means me or my husband can research what is actually available or put forward a strong, targeted argument as to why we need support. And that’s a huge difference between someone of my age, with my condition who has English as a second language and didn’t necessarily finish their school education and me. The assumption in healthcare is that you’ll ask for help if you need it, rather than someone talking you through each step. What if you don’t know what help you need? And then who do you ask? It’s hard work being chronically ill and disabled anyway. But it’s a lot harder if you’re not privileged.

I don’t trust doctors

Or most healthcare professionals, really. Or, at least I don’t immediately trust them. It means I ask a lot of questions about what’s going on, and do a lot of background reading. I’ll admit that it can make me defensive and on guard, but I try really hard to not walk into consultations with that mentality and give people a chance.

I wasn’t always like that, I’ve just had a lot of negative experiences. Some highlights include:

– a GP at uni giving me theophylline, an asthma drug known to give people seizures, even though the local advice says not to use it. I had a seizure.

– I had to fight a lot for nebulisers while having asthma attacks. I don’t wheeze in an asthma attack, I cough, but this was ignored by a lot of people and I was told repeatedly I was having anxiety attacks (I wasn’t) and to stop wasting people’s time.

– an endo told me my adrenal insufficiency symptoms were ‘all in my head’ and I should ‘go away and sort out my clear psychiatric problems’.

– I rang my designated nurse to tell her something was seriously wrong and she told me I ‘definitely didn’t need hospital’ and I should ‘try to get on with my day’. I ended up in hospital an hour later where the doctor there told me off for leaving it too late to go to hospital and almost ending up in a coma.

– lots of medics have told me I’ve brought on my problems myself by being overweight, despite the fact I put on weight since being diagnosed.

– my GP practice refused to give me my repeat steroids for months (they thought I was an addict) and said to me ‘you do what you have to do then, dear’ when I told them I’d die without them.

– when I’m in hospital, I regularly have to fight to be given my steroids

– 2 nurses tried to give me an overdose of morphine because they hadn’t communicated/charted it properly. The only reason they didn’t manage to was because I’m hyper vigilant about what meds I get given and why since having the seizure.

– hospital staff once left me lying on a floor refusing to give me my emergency injection because they were concerned about ‘getting into trouble’. They didn’t offer any other means of help.

That’s a few of my negative experiences. There are more. It doesn’t help having a condition which isn’t widely known about because it means also having to work out what people’s knowledge of it is. Medical appointments/interactions are pretty stressful for me except for with a few people who I know who I can trust. But, like I said, I don’t want to go into consultations on the defensive straight away so I try to give people a ‘chance’. Which means I’ve subconsciously developed some habits which help me decide fast who I can trust and who I can’t.

1. If the person doesn’t care enough to introduce themselves to me, then they’re probably more in medicine for the science rather than the caring for humans bit.

2. I ask them a reasonably basic question about my medical history to see if they’ve read my file (if they have access to it).

3. I tell them about my baseline and whether I’ve been stress dosing. If they can’t keep up, they probably don’t know what adrenal insufficiency is.

4. I don’t mind if they don’t know what AI is, I care if they are willing to admit that or try to bluster through the consultation pretending they do. If they ask me about it, that’s great, if they don’t, I start to not trust them. If they tell me ‘stress dosing is only for sepsis’ or something equally as stupid, then I tend to ignore most of what they say from then on.

5. I tell them my tachycardia improves and my BP goes down with more steroids. If they try to tell me I’m wrong, I definitely don’t trust them.

6. I ask them what the next steps in my treatment plan is. If they make something up entirely, I don’t trust them. If they say they’ll check or give me accurate advice and then follow through on it then I trust them. Do they know what the AI protocols are, or are that at least willing to find them out?

By now I’ve decided if that person is trustworthy or not. If they’re not, I double check what they’re doing with another member of staff, pre-empt the problems I might have and be proactive in sorting them before they become problems and chase the things that people might have just ‘forgotten’ about. I’m still polite, but similar things happen every time so I know what happens.

You could say that I’m going to annoy people by having my ‘test’ as to whether I can trust people, and create problems with my own care. But think about this; I trusted people in all of those examples above and bad things happened. The only person who really suffered was me. Catastrophising isn’t blowing something out of proportion if it then comes true. Because people have made mistakes which have had the potential to kill me several times, I don’t trust people. And very few medics have given me reason for me to start trusting HCPs again. It’s not my job to massage a doctor’s ego about the fact that I can come across as argumentative at the end of my 6 step test. I’ve given them 6 chances to show me that they can be trusted and if I’m not convinced by the end of it, I’m going to double check things. If they’re so confident I’m wrong, then they can back it up with something better than ‘I went to medical school for X years’, when we all know that they’ll have only spent about 20 minutes, if that, studying my illness.

So I was really happy when I met a new consultant last week and he was really nice. And I can trust him. He cared about introducing himself not just to me, but also my husband. He’d clearly read my patient summary. He didn’t really know about AI in terms of steroid coverage for procedures, but he took my word for it that I did.

Fingers crossed for more positive experiences.

Lent

Today is the start of lent, where lots of people give up things or pledge to ‘do better’ at something. Having been brought up to be catholic, the whole guilt aspect of lent was rammed into me by a couple of over eccentric nuns at primary school. So I’m not really a big fan of lent even now as an adult! But every year I feel as though I ‘should’ do something.

I’ve given up a lot in the last year food-wise, which is what a lot of people choose to do. Nutella being a huge one for me (love Nutella). I only ate 1 spoonful of it in my porridge every day, so it’s not like I was in a Nutella frenzy eating a whole pot with a spoon (I wish), but it was my one treat of the day. But it made me tachycardic so I stopped eating it. I also gave up lots of other things I liked too; potatoes, raspberries, chocolate, cake… more recently I’ve stopped eating chicken, pork, and wheat because I’ve developed an intolerance. So, unsurprisingly, I don’t feel the need to give up any more foods to challenge myself!

What *is* actually the point of lent? Is it to develop some kind of discipline? If so, I think I’ve proved that I can do that. Or is it to pay penance for our ‘sins’? Because I spend most days feeling like I’m going to pass out, feeling sick and in pain, to name a few symptoms. So whatever penance I’m paying, I think I’m probably due a rebate of some kind!

I could give up something I like doing, like crochet. But what would be the point? And, actually, crocheting means I send animals to sick and vulnerable children for charity, so if I’m not crocheting, I’d take that away from children.

For some people, perhaps without realising it or intending to, lent has become a way of proving to themselves, other people, or whichever god they believe in that they are a ‘good’ person. Disciplined, regretful of their sins, noble or doing something for other people. I don’t think that’s the point of religion. I don’t think you should only be a good person for 40 days and then return to normal. I think the point is you’re a good person all year round. Either that, or some people are in it for the social media likes, which is also not the point.

So for lent, I’m going to keep doing what I do the rest of the year; looking after myself the best I know how, being kind to other people, doing the charity things I do. Life has got enough trials and hurdles in it without adding in 40 days of self-inflicted ones.

A rant about waiting lists

I spend a lot of my time on waiting lists for having tests or seeing consultants. Waiting lists are annoying. I understand the need for them, but as a complex, chronically ill patient, they really drive me mad. Here’s a snapshot.

Last spring/summer I had really bad diarrhoea which kept putting me in hospital. I went to my GP about it, who said ‘wait til you see your endo’. Except I ended up missing my appointment with my endo in August, because I’d been emergency admitted to hospital because of the diarrhoea. So that appointment got moved back to September.

In September, my endo said he didn’t really think it was endocrine related but he’d do some tests and to come back in 8 weeks. Except there weren’t any appointments then (November/December), so I was given an appointment with his partner in January. Meanwhile, I was still getting admitted to hospital pretty regularly. One junior doctor pulled some strings and got me some extra special testing in November while I was admitted, but the results take a few weeks to come back.

A couple of days before Christmas, the test results came back and I needed a referral to a gastroenterologist. But the earliest appointment was in March. So I went to my endo appointment in January and he said ‘wait til you see the gastro consultant’. Meanwhile, one of the tests I did in September for my endo had come back saying I needed to see a cardiologist. So my endo referred me, but the earliest appointment was in March again. My endo wants to see me after I’ve seen all the other specialists, because he can’t do anything until things have been ruled in/out, so I have an appointment for July.

The same junior doctor from November decided my liver needed regular checking and wrote to my GP, who sent me for tests and something got flagged by the hospital. But by the time it filtered through the system, it was January. So my GP ordered an ultrasound, which happened in February (actually quite quickly!).

I went back to my GP for the results at the end of February and he said I needed to see a liver doctor. Earliest appointment is June. Then the cardiologist moved my appointment from March until May, which is another thing that happens a lot.

It’s not happened yet, but here’s what will probably happen. I’ll go to my gastro appointment in March and they’ll say they either need more tests or wait til I see the liver doctor in June. The liver doctor will probably order more tests since I haven’t really had any yet, and will likely say that I need to see the gastro doc again before they have input, because gastro and livers are linked. But as high heart rate can also be linked to gastro problems, someone will probably also say ‘wait until you see the cardiologist in may’.

Which means that nothing will have happened before my endo appointment in July which he can work with, so I’ll have to wait another 3 months at least before seeing him again, not to mention fitting the other doctors in. And suddenly I’m looking at January 2020 by the time I’ve gone backwards and forwards a few more times before I get any kind of definitive help with anything for a problem that I started going to my GP about in Spring 2018.

You might be thinking ‘well, these things take time’. Yes, they do. I appreciate that. But this has been happening since 2012, when I first had serious health problems. Since then, I’ve been through 5 different hospital systems, 2 different GP practices, at least 8 different specialities, I can’t even remember how many doctors/consultants I’ve seen. And most of that time hasn’t been trying new treatments, it’s been hearing the phrase ‘wait until you see X’ and being put on a waiting list or passed onto someone else.

One of the things I’m finding increasingly frustrating is the fact that I’m getting diagnosed with additional problems partially because other treatments took so long to start in the first place, or were overlooked for too long because I was having to argue with people to get them to take me seriously. I didn’t have liver or cardio problems until a couple of months ago but they’re getting worse because of untreated other things. My health isn’t a slightly irritating but completely manageable problem, it’s something which severely impacts on my day to day quality of life and something which puts me in a&e and hospital more times in a year than most people will experience in their entire lives. My conditions can kill me very easily, but I’ve been left to deal with it pretty much without any help from the medical world both from a mental and physical health perspective. Any ways of managing everything that I’ve adopted, and some of the diagnoses I’ve eventually been given, are from my own research, reading and ‘experiments’. Being on a waiting list shouldn’t be a reason for everyone to ignore you in the meantime. But it’s been 7 years now.

All this started when I was 24, so most of my 20s were spent on waiting lists, in hospital or being ill at home. In that time, my friends have been making progress in their careers, travelling the world and having children. Meanwhile I’ve had to give up my career, was too unwell to travel out of the county, let alone the world, for a lot of that time, and made very little progress on many different waiting lists.

I get the need for waiting lists. But there has to be a better system when you’re on more than one at a time. What I need is a multi discipline team, but they don’t exist now due to budget cuts.

Patient admin is hard :\