The EDS Chronicles: Losing trust in professionals (2/2)

Dear Blooms,


Towards the end of December, I published a blog post concerning my experiences with professionals and why I have lost trust in so many of them. Today, I wish to finish this two-part edition to The EDS Chronicles. In part one I mentioned briefly that I shall cover ensuring professional accountability and the steps I want to take to ensure that I fight for my rights as a patient, and my future as a chronically ill young woman in the NHS.

As someone with a condition such as EDS, which isn’t widely understood or recognised in general practice by any means, I have experienced my fair share of ignorant receptions to my health, especially from professionals. However, one thing I have learned is that what is important is that you do your research on your condition, read some academic articles about possible avenues of treatment and the importance of detecting and diagnosing the condition, and ensure you pass these over to your doctor. Preferably, get them to put copies of the documents into your patient file, as if you receive a second opinion which proves you were, in fact, correct in your assumption, you can take the necessary steps to raise your concerns about your condition going unidentified.


Secondly, if you feel like you aren’t getting anywhere with your doctors/professionals, please ensure you receive the necessary support from those around you in case you require an advocate to help you voice your concerns about your patient-doctor working relationship. If you don’t have the appropriate support network, this is okay (and understandably less than ideal), however, get in touch with registered organisations which specialise in your specific condition, and they may be able to point you in the right direction.

Thirdly, keep a symptom diary leading up to your appointments, so that your medical professional can have a clearer understanding of any patterns or abnormalities in your symptomatic expression, as this could be helpful in the detection of the condition, and it also provides as evidence of the severity and variety of symptoms you do experience – so that if you are left without the adequate support, monitoring bodies can see your professional’s failure to detect given the information they were provided with.

Lastly, please don’t feel like you have to believe what doctor’s tell you because at the end of the day if you have a gut feeling about what could be the root cause you are more than entitled to explore the possibility of this being the reality. However at the same time, just because we have suspicions doesn’t mean it’s definitive; so asking for a second opinion is entirely within your rights as a patient. Furthermore, if you aren’t fully understanding the information your professional is relaying to you (which is totally fine especially if you have brain fog), let them know and ask them to put it in layman’s terms so it’s understandable to yourself and other’s supporting you throughout your journey. In addition to this, if you don’t think your doctor has provided you with the necessary resources, definitely contact their secretary and request that you be provided with them.


Sadly, like so many other individuals in the chronic illness community, I have experienced quite the high volume of inappropriate behaviour from healthcare professionals in regards to my overall wellbeing. I elaborated on this matter in part one.

When I used to experience these behaviours from professionals I was young and naive – I was taken aback and hurt; wanting to cry and just go home. However, if I were to play devil’s advocate and choose what one piece of advice I would give to my younger self during these encounters, I would certainly affirm to myself that they’re speaking with ignorance and are clearly uneducated in this particular area; they’re showing themselves up, not you. Stay focused and be present and as grounded as possible, and don’t be afraid to write down what they have said during the appointment, as sometimes the stress of the ordeal can make us forget what exactly was said.

So what can we do about this?

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. You can find officers from PALS in your local hospital.  ~

What can PALS help with?

On their website, they list the type of information they provide, including:

  • the NHS
  • the NHS complaints procedure, including how to get independent help if you want to make a complaint
  • support groups outside the NHS

As well as how to go about providing feedback on services.

In summary, I can say with absolute certainty that I strongly believe that everyone should ensure that they hold their professionals accountable if they have been mistreated, as it infringes upon our rights as patients – and we wouldn’t wish that upon a loved one, would we?

pizap (4)

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