Adenomyosis · Endometriosis · Life · Tips

I Feel Like I’m Wasting Their Time

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On Friday, after being so incredibly unwell with acute and severe pain on Thursday, I just about managed to get to a GP appointment.  This was an appointment that was booked off the back of another GP – I’d phone Thursday morning in a bit of pickle and managed to get a same-day phone consultation.  The GP I spoke to wasunfortunately not my usual one, and they advised me that they’d prefer it if I saw a female GP and hence why my appointment on Friday was booked.

I did spend some of Thursday wondering if I should have pushed to be seen that day, especially when none of my pain relief was working and I was resorting to having a boiling hot bath in a last attempt at some relief, but in the end I thought it was probably best to wait another 24 hours – it was a GP who knew my well, it meant I didn’t have to drive anyway and if things got worse then I could always phone back.

So Friday came and thankfully my pain was better enough to allow me to drive to the surgery.  I was even contemplating heading into work to be non-clinical for the day dependent on what the GP advised.

When I was called from the waiting room, I hobbled in to sit down and that is when it started to become clear that perhaps the seriousness of my pain hadn’t been documented from yesterday – I was having what seemed like quite a casual conversation about it all and I felt like I was forcing my point across – “the pain is horrendous”, “it’s never been this bad”, “acute and severe”, “I can’t keep living like this”.

Now maybe I had too high expectations for this appointment – I’ll admit that I was hoping that the GP would at least talk to a gynaecologist or send me for an urgent ultrasound.  Am I wrong in thinking these things?  I don’t think so – let’s not forget I was in agonising pain that was unrelenting and nothing was touching it, I was struggling to move and was missing work.  But the outcome really was as simple as going over my pain relief (for the millionth time), prescribing me an alternative to one of them and advising me to make an appointment with my gynaecologist.  I was also told that I really needed that pain clinic appointment, as they are the best team to help me (I have an appointment in a few weeks, but what am I supposed to do until then?).  I even asked about an ultrasound, but was told it was not necessary unless this acute episode of pain lasted a few more weeks, and when I asked what the gynaecologist would do, there was a query over whether more surgery was needed (NOTE: it’s only been 12 weeks since my last one) or if there was a particular hormone-based treatment that was safe for me to take.

Clearly, I left feeling quite flat.  I even decided to go to work – it felt like because the GP hadn’t seen anything particularly urgent in my pain, then I was fine to go to work.  I felt like I had wasted an appointment and my own time, and that if this was how it would go every time I had severe pain like this, then I was stuck.  I could even go as far as to say I felt stupid for making an appointment – the information and advice I had been given I had heard about many times before and maybe I just needed to learn to live with it.

But it wasn’t until I was talking to one of my friends on Instagram (@crazybones1979 – you should definitely give her a follow!) that I realised I wasn’t the only one to feel like this.  And it got me thinking – why is it that those of us with chronic illnesses are often made to feel like our appointment are a waste of time?  I’ve had numerous appointments where I have left feeling a bit foolish for going.  But I am struggling to understand why because our illnesses are real, they have real symptoms and they often cause real problems for us.  Just because it is incurable or or hard to manage or our primary care team can’t help right there and then, doesn’t mean they can’t try.

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From speaking to @crazybones1979, it became apparent that we’ve had similar experiences – particularly where doctors have focused on one particular diagnosis where it wasn’t the right one.  The amount of frustration that comes from these types of appointments, and the realisation how much time really has been wasted when you get the correct diagnosis, is ludicrous.  And often this feeling of wasted appointments come with feelings of not being listen to or being made to feel like your symptoms (or even disease) are invalid (much like our experience above!).  These are quite obviously emotions we should be being made to feel.

It baffles me and upsets me when I have to go through something like this, but even more so when I realise I am not alone – so many of us in this community have real problems accessing the help we need.  Why?  Perhaps it stems from the simple lack of educations regarding our conditions – a lot of us suffer with conditions that are either rare, have unusual symptoms or are “taboo” subjects.  But I also think there is an element of disbelief – I certainly felt on Friday that because I had managed to turn up to the appointment, I probably looked “well” and appeared comfortable, that my high level of pain was not believed as much as it should have been.  Do they not see how much we hide behind our smiles or our personalities?

I am hoping that the amount of awareness I and my fellow chronic illness suffers can raise can help break through this barrier and prevent us from feeling like we have wasted someones or our own time.  I also hope that the negative emotions we are made to feel, and that pit of “why does no one believe me?” can simply be a thing of the past.  But I do know that there is a never-ending supply of support out there in the chronic illness community, so don’t ever feel like you are alone or can’t reach out.  Trust me, we are here – we’ve often gone through very similar situations and have felt the same way.

If you are experiencing a similar situation, or are concerned about how a future appointment may go, then I hope the tips I’ve listed below are helpful;

Change Healthcare Professional…

Here in the UK we have the right to make a lot of choices regarding our care (e.g. where we are treated), so if you are not satisfied by what someone is telling you, see someone else.  And as I have mentioned before, even though you may have a GP or consultant allocated to you, you have the right to switch to someone you feel more comfortable with.

“I want a second opinion, please,”

Don’t ever be afraid to ask for a second opinion if you are not satisfied with with first.  This could be because of a treatment option, diagnosis or results interpretation, but you have every right.  You’re healthcare professional shouldn’t be offended – you are only asking for your own peace of mind and looking out for yourself – but if they do, then perhaps that indicates they weren’t the best person in the first place.

I’ve been for a second opinion on a urology consultant before after a horrendous experience at a local hospital.  I even changed hospitals because I was determined not to set foot in the other one again.  I was given a completely different diagnosis and course of treatment, and the consultant was wonderful.  It was worth it in the end.

Complain

This word might fill some of you with dread, but trust me, it can have a positive outcome.  Complaining is not a nice procedure to go through (particularly if you are having to go through an awful experience), but sometimes using your voice is the only way to make things change for the better.  Complaining should result in the experience not happening again and perhaps provide further training to help future understanding.

You can complain verbally or in writing.  Here in the UK, the NHS has a PALs (patient advice and liaison service) service which is brilliant – it is ran by people independent of the healthcare system and offers confidential advice and support, and deals with complaints and concerns you raise to them.  You can have a read about it here – I’ve used them a few times and found them to be incredibly helpful.  Another method of complaining is writing directly to the practice or hospital.

Speak Up!

You don’t specifically need to another healthcare professional, but if you are dealing with some negative emotions or starting to feel negative about yourself, talk to someone you trust so that they can help you feel better.  There is nothing worse than getting upset because no one believes you and being on your own

Book Another Appointment (with Someone Different!)

Might be a simple one, but let’s say you’ve been to the GP with some symptoms that were completely pushed aside and you’ve been told to “come back in a week”.  You’re still feeling no better the next day and you weren’t happy with how you were treated the first time – book another appointment.  I have done this in the past when symptoms of a kidney infection were not taken seriously.  No one can get annoyed at you for taking appointment as you’re just looking after your own health.

Support

Taking someone with you to an appointment is something I have written about in related articles, but I’m repeating it here to show you how important I think it is.  Having an extra person gives you moral support, but also gives them the chance to speak up (if you’re comfortable with that) if you’ve missed something, or the appointment is going tits up.  As well as my husband, I’ve taken my parents to appointments before and have found it super beneficial

And Finally…

Please, even if you don’t remember half of what I’ve written, then just remember that being unwell is not your fault, and you should never be made to feel like you are wasting someones time, your own time or an appointment just because you want to feel well again.

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