Sunday, 29 October 2017
As I touched on in my previous post I have recently been given new diagnoses. In some ways they aren’t new, and have been suspected for a while now, but I needed to see someone specialist enough to assess and get official diagnoses!
We (me and my team) have suspected I had Ehlers Danlos Syndrome type 3 for quite some time now, along with associated conditions, however no one here was specialist enough to diagnose EDS locally - its nearly impossible to get an official diagnosis here, and to get a referral to the EDS specialist is nearly impossible without a diagnosis, so we became stuck in a loop while my body increasingly misbehaved and no one knew how to really help. In the end I was told my best option was to see Professor Grahame - the UKs EDS specialist - privately for an assessment appointment. I then got in touch with Professor Grahame and his secretary and discussed whether it’d be worth me going to see them, which it was agreed it very much would help and that he would be able to diagnose and write a report with what should happen next in my care. Yay! Finally getting somewhere! Thats when it hit me that I’d need to find the money, not something I have in abundance, but with friends help I managed to raise enough to go on a gofundme page, and you pay on the day so I could book in advance, I just then had to find the money.
During that time I faced a lot of unexpected hate and belittling, I had a lot of people speak to me who have chronic illnesses themselves but placed judgement on me for going with what had been recommend to me by medical professionals. Many were adamant that if I needed to see Professor Grahame then the NHS would have referred me. If only the system actually worked that way. Unfortunately it doesn’t, and the NHS is incredibly stretched, and EDS is not very well known about, and policy can block the way to many many things that would potentially help. I only mention this because I know that others may go through similar judgement if this is the route they end up needing to go down. The reality is that you have to do what is best for you and for your health, and I wasn’t going to let the judgement of others stop me doing what could potentially help me more than anything else, especially when the professionals say its the right thing.
Waiting for that appointment to come round was hard, very very hard! I tried to keep a diary of everything in the mean time, I asked others I knew who had been for any tips on making the most out of it, but I was so nervous. The day finally arrived and off we went to The Hypermobility Clinic! To put it simply, I needn’t have been anxious! Professor Grahame was the best doctor I’ve ever seen, and also probably the oldest! An incredibly wise man! We went through various questions and examinations, he took some photos of me for his medical journal (once he found out how his phone camera worked) and did some measurements. He diagnosed me with Ehlers Danlos Syndrome type 3, Postural Orthostatic Tachycardia Syndrome and Craniocervial instability (that will be further confirmed and looked at after more testing). He apologised for the medical profession that I’d been so let down with regards to diagnosis and treatment when I’d been showing the key signs for at least 18 years, and stated that it isn’t all that uncommon unfortunately. He is organising various referrals through my GP and I will likely see him again through the NHS now I have diagnoses.
So what are these conditions? I’ll be writing about them in another post soon, I don’t want to overload one post!
Love to you all
Thursday, 26 October 2017
Recently a large newspaper wrote an article with the same title as above. The article was filled with stigma and was very damaging. It was taken down and a statement was released by time to change, and I hope an apology will follow soon. But this is a topic close to my heart, having a personality disorder myself.
So how can you know if someone you work with has a personality disorder? The best way to determine this is by getting to know someone over time, listening to them, and being open to talk about mental health - the positive and the negative! There is no foolproof way to identify a person who has a personality disorder, other than them telling you that they have that diagnosis. If your worried about a colleague then offer support, see if you can do anything to help, pop a little note or email to them to make sure they know they’re no alone and its OK to speak out. Equally give them time, they may need time before they feel able to disclose something like that.
It may also help to familiarise yourself with different areas of mental health, both for you and your colleagues sake. Explore what can increase mental wellbeing and what can decrease it. If you know someone struggles with a particular disorder or illness then ask them what its like for them, or go to information pages like mind, rethink and more. Remember everyone is different and unique, a personality disorder or other mental health condition may be a part of they’re life, but get to know them as a person, not just diagnostic criteria.
What is a personality disorder? When we talk about personality within psychology and psychiatry we aren’t looking at what general society refer to when using the word personality. We often think of personality linked to words like bubbly, caring, compassionate, rude, aggressive, in your face ect. If we take that as what is disordered that would be incredibly damaging, telling someone that who they are is disordered in some ways. However in psychology and psychiatry personality means the way in which we deal with life difficulties. So a personality disorder is a disorder/difficulty that effects the way we deal with life difficulties. Its an important thing for people to know, but often its not talked about, whether thats because of lack on knowledge or stigma.
I have borderline personality disorder, sometimes known as emotionally unstable personality disorder. The key symptoms are emotional instability, and rapid changes; emotions being extremely intense; difficulties with impulse control; chronic emptiness or unstable sense of self; self harm; suicidal tendencies; splitting (having conflicting urges, impulses, desires and not being able to choose one); and more. These are all things that make some aspects of my life harder, however there are ways in which these parts of my mind can be used as a positive such as being fiercely loyal and committed; gaining emotional intelligence and wisdom through what we go through; being empathetic and deeply caring; being able to see things from multiple view points; and many more!
So to sum it up for you:
1 - talk to your colleagues and friends about mental health
2 - invest time in knowing more about mental health and mental ill health
3 - if someone you care about has a particular disorder or illness look it up, ask them about it, familiarise yourself
4 - remember everyone is an important, valid individual who has they’re own struggles and experiences that shape them
Love to you all
Saturday, 21 October 2017
I am aware I haven’t been blogging as much recently, life has been a challenge, but I feel quite passionately that more awareness, understanding and insight needs to be out there for those with complex and chronic conditions. I’m aiming to blog mostly about my conditions and the ups and downs, the things that help and the things that don’t, the things others don’t realise, and tackle some stigma that is there around having these conditions. I also want to put out there the kind of information, resources and helpful tips I wish someone had told me when things first deteriorated!
So a brief update, which I will do further posts about at a later date; I have recently had my official diagnoses of EDS-3, POTS and CCI (don’t worry I will explain those shortly!) by Professor Grahame; I have also been journeying through the process of finding suitable accommodation; I passed my first year of OU and have started my second; and many other things I’m sure will be spoken about in due course!
A brief guide to abbreviations:
EDS = Ehlers Danlos Syndrome
POTS/PoTS = Postural Orthostatic Tachycardia Syndrome/Postural Tachycardia Syndrome
CCI = Cranio-cervical Instability.
Also, if there are any specific topics you want covered just let me know and I’ll see what I can do!
Love to you all!