Being sick isn’t even the hardest part of being sick…

General Practitioners work on evidence, signs of illness, test results. They study their science for years to become doctors and generally they know their stuff. If you have an ear infection, they can help! If you suffer from a chronic, rare condition that requires a specialist then you’re up the proverbial creek because you often have to become your own doctor to get the referral you need, and as everyone knows, when you become your own doctor it’s a slippery slope to being diagnosed as a hypochondriac. They don’t like being put in a position where they don’t know much about a condition, yet it’s always going to happen because they cannot possibly be an expert in everything – nor are they expected to be. That said, should the chronically ill patient have to suffer because of a doctor’s ego? No. Do we have to? Yes. All the time.

In the UK right now the buzz word is anxiety. Everyone has anxiety. So many illnesses can be attributed to anxiety if you try hard enough. While it is fantastic that those who genuinely suffer from this crippling mental illness are being taken seriously and treated with far more empathy, it really sucks when a doctor relentlessly tells you that your experience of very real physical pain is due to a mental illness that you know you don’t have. The more you get exasperated with your doctor, the more you look like an anxious person. Now I do get anxious, but only about impending doctors’ appointments, and for good reason. It’s not a mental illness when you are anxious about something that has previously caused you emotional distress – its fucking self-preservation.

So, you go to your GP knowing there is a bigger picture that needs to be looked at but you only have ten minutes to explain. There is no way that you are going to precisely and concisely make your point. You are going to break down in tears at the frustration of the whole thing. Maybe you’re just anxious? You’ll have your thyroid, liver function etc tested. They will all come back fine. You’ll be sent for an x-ray of your lumbar spine and your GP tells you its fine – only later will you discover it absolutely wasn’t fine when you see a specialist. You’ll develop heart palpitations, shortness of breath and other issues with your autonomic nervous system. You’ll probably be a bit worried about this because it’s never nice to feel like your heart is trying to escape your chest cavity – yep, definitely anxiety. Because you have been to the doctors so many times you will have seen half a dozen different doctors and eventually you get to the point that you see a doctor who is completely unaware of your original complaint of crippling joint and back pain. They will do their best to help with the issue you present with today, completely disconnected from the year of fortnightly visits because they don’t have six hours to read your notes. They will skim your notes and read that Doctor Smith queried an anxiety issue 8 months ago. Bingo! Your muscles hurt because you are anxious and tense. Do some yoga, meditate. Lose some weight, fatty.

hairpull

Finally life cuts you some slack. Because you didn’t care any more about looking like a hypochondriac whack job, you handed your GP a two page document listing your signs and symptoms and your theory on it all. You ask to be referred to a specialist after going bat crap crazy in their office in front of your partner who came along because they didn’t believe you about how the doctors speak to you. The GPs don’t take you any more seriously but there is hope that a specialist will. You trundle through the months waiting to see a specialist, you wonder if you are a fraud and if you maybe are just anxious and then you realise that the only issue causing your mental health to wain is the fact that the people who are meant to help you are making your life a misery. Every single day is a painful struggle. You want your life back and then… You see a specialist! HOORAY!

Within half an hour you are diagnosed with the illness you suspected months ago. All of your weird and wonderful symptoms are explained. They are absolutely significant when you look at the bigger picture. That acid reflux that no one bothered to investigate, the IBS, your life long ENT issues, the fibrous lumps you get in your breast tissue and why the local anaesthetic doesn’t work when they try and cut them out? Drug allergies, palpitations, breathing issues, THE PAIN… All explained. The only thing that can’t be fully explained by your specialist is your hormonal issues – because that isn’t his speciality. He admits this and suggests you see your GP to get to the bottom of it. The only thing is that your GP never thought you were ill in the first place, will they care? No. Of course they won’t.

You will go to the GP anyway, they won’t believe you about your diagnosis because they haven’t heard back from the specialist yet so you will wait a number of weeks (like you always do) because your GP is convinced that you are an anxiety ridden hypochondriac at best, a big fat attention seeking, time wasting liar at worst. When you explain the effect of hormones on your DIAGNOSED CONDITION, they will dismiss this because they don’t learn about it in med school, they might even suggest a potentially damaging course of action based on their absolute ignorance on the topic. You’ve spent months learning about it, desperately trying to figure out why your body is behaving the way it is but because you read about it online, you are Jon Snow – you know nothing.

You trundle off home to find some proof that backs up the fact that a person with your condition should absolutely not take the course of action that your GP has suggested. Now you need to provide evidence for everything because no one every takes your word for it. You’ll print it off and hand it to them. It will not be well received regardless of how polite you are. I’m not sure what happens next but I’m pretty sure it’s going to be involved in the mother of all complaints that the NHS will soon receive.

crystal

More and more I read about people with strange conditions being treated like dog shit by their general practitioner. Banded among all of the malingerers and drugs seekers there are honest people like us trying desperately to get some help. Being sick and dealing with the symptoms is really tough. Dealing with the people who are meant to help is like being a contestant on the Crystal Maze, except you are blindfolded and some of the crystals are hand grenades. Some fuckwit has let the mutts from The Hunger Games loose and there is a very real possibility that you are literally going to shit your pants. You might get there eventually but you’ll have blown off one arm and will almost certainly need clean pants. Wouldn’t it be nice if we didn’t have to play the game and just got some help? We can dream…

Ren x

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4 thoughts on “Being sick isn’t even the hardest part of being sick…

  1. Ms. Mango says:

    I dream of a day when health care systems work for the patients and not for the pharmaceutical companies that push the wrong drugs (or the expensive ones). I don’t think either of our dreams are going to a reality with the way things are going, but keeping that hope alive is part of trying to stay positive.Try to relax in the mean time between doc visits and enjoy your weekend!

    Liked by 1 person

    1. brokendownbody says:

      The thing about the UK is that (in Scotland) prescriptions are free. The issue here isn’t that the companies are pushing the wrong drugs but that the doctors are arrogant twats who generally won’t admit that something is more specialised than “general practice”. It’s very odd 😆 x

      Liked by 1 person

      1. Ms. Mango says:

        Prescriptions may be free for the patient (we have a great medical plan here to) but someone either insurance, the government or private practice groups themselves have to flip the bill. So they push the wrong drugs that have high value instead of finding exactly what will work. It ends up benefiting everyone BUT the sick patient that needs relief. GP’s are great for getting a flu shot, physical or when you need some stitches but specialists are needed for anything more. Unfortunately they are few and far between. Have you considered trying to call private practice offices yourself without a referral? Worst case scenario you could try going to a walk in clinic and asking the doctor on call for one. Sometimes they’re so busy and don’t want to read your file they just go along with the referral without much thought as to if you need it or not. Scary…. but it could get you what you need a little faster.

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  2. brokendownbody says:

    I genuinely think that in the UK we don’t have that issue the same way the US does – thankfully! There is always pressure on doctors not to prescribe the expensive drugs as a first option but they have never prescribed me the “wrong” drug due to a matter of cost, more due to me being allergic to EVERYTHING and them not being sure what was wrong. However, we only get generic drugs via prescription unless for some reason a brand name is only allowed to be used to treat a specific issue – the only brand name I’ve ever had was Lyrica as the generic Pregabalin doesn’t seem to be advised to treat chronic pain, but there was no issue in them prescribing it. When I was sick they prescribed anti-emetics, when I was constipated they prescribed laxatives. Maybe they prescribe things too easily here and we are guilty of not researching things because we don’t actually pay for it?!

    I’ve got a rheumatologist now so seem to be on the right path. I also have physio/osteopath on Monday who will report back to him. I’ll just ask if they can pass along to him that my GP won’t listen to me regarding hormones/contraception and can he either advise them or suggest they refer me to medical gynaecology.

    It is exhausting. Even with a diagnosis, I still have to PROVE my medical condition to my GP because they refuse to admit that they were wrong. GAAAAH!!!

    R xx

    Like

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