Recently I have been taking a break from creating content on Instagram, and being as productive with my writing behind the scenes – and that’s because I’m mentally in need of some respite. Although, as I mentioned in my last post, writing is a cathartic practice for me, and therefore if I have the urge to create something which is beneficial for myself, and a community of wonderful people out there.
One of the main reasons I needed to take a step back was because my physical health has been difficult to navigate recently, and this is in part due to undiagnosed symptoms of MCAS – or Mast Cell Activation Syndrome. As this condition is a bit trickier to diagnose, and it’s a recent discovery, many clinicians don’t fully understand it.
As I’m sure many people reading this know, we oftentimes get dismissed when our symptoms aren’t fully comprehensible to a medical professional, rather than being referred higher up, or told ‘I’m not sure what’s going on, but I want to get to the bottom of this with you’.
Over the course of my 7 year health journey with disabling chronic illness, it’s fair to say I’ve been to many appointments concerning my care in some capacity. No matter the type of appointment, for example, whether it’s a financial support assessment, or to seek a diagnosis and treatment for your symptoms, they have one thing in common:
We, as patients, oftentimes need to prepare for them due to the barriers that we experience because of our condition(s), and as a result of institutionalised ableism, our previous experiences of medical gaslighting and subsequent trauma, or because there is no chronic illness handbook to inform us how to be the best advocate for ourselves.
…And it’s exhausting! Utterly draining and it comes at a time wherein as a patient, we should be resting, not overdoing it to ensure we’re prepared for the appointment to go as smoothly, and cohesively as possible, but at the expense of our mental and physical energy.
The importance of diagnosis
We’re often told that “we treat symptoms, and don’t like to label people”, however I absolutely disagree with this sentiment. It’s nonsensical, if there are apparent and physical symptoms of a condition or comorbid conditions and you are purposefully undiagnosed because they don’t like to ‘label’ you, this is so inherently ableist, and I think because you hear this rhetoric so frequently, especially in paediatric care, that it’s important to unpick and discuss what’s actually at play when they say this, and how it can feed into, and reinforce a patient’s internalised ableism.
By referring to a diagnosis as a label, it infers that there is an automatic stigma associated with it, and in order to prevent someone from feeling like they are defined by their condition, and refrain from accepting their disabled identity, a diagnosis is passed off as an unnecessary burden which doesn’t need to be addressed because as long as symptoms are treated/managed it doesn’t matter. To me this is absolutely ludicrous and I have never understood how this practice can be ethical or moral at all.
My condition doesn’t define me, and neither does my disability but yes – it’s a big part of my life, yes it has shaped me in part to be the person I am today, yes it does impact my life negatively and at times I get frustrated with my loss of abilities, or how exhausting it can be juggling symptom management and everyday life.
But this doesn’t mean that your condition is who you are, you are not the pain you associate with your condition, but you deserve to take up space and be granted the basic recognition with a diagnosis because it does matter; it does make a significant difference. Especially when you require medical documentation and certified diagnosis to receive financial support, disability support in education or the workplace, and to be a part of medical trials for your underlying condition. Being disabled shouldn’t be something we’re discouraged from embracing, it shouldn’t be given this negative stigma within a healthcare environment, and it certainly should not be pushed in a paediatric care setting because as a developing individual, it’s much easier to be vulnerable to internalising the ableism projected onto you.
Medical gaslighting and the lasting effects
I use this expression a lot in my writing, as it’s a massive issue within healthcare, especially amongst people with lesser known or understood conditions; but what does it actually mean?
Medical gaslighting, in my opinion, is a form of emotional abuse – especially when you consider that the person making you question your symptoms, the severity of them, why they persist, and the types of support you require, is the very person you go to for answers and support. An authority role, which causes a sense of intimidation, not an inherent sense of empowerment to contradict and counter their belittling language and ableist attitudes.
These experiences are traumatic, and can have lasting and significant consequences.
As someone who experienced a significant amount of medical gaslighting, in particular throughout my adolescence, I can account for the way these experiences affected me, and what they inevitably manifested into over the years.
Whenever I would experience new symptoms, or my pain would be significant enough to cloud my concentration or cause me to take the necessary time to recover or support my condition, I used to feel somewhat pathetic due to the internalised ableism I subsequently experienced because of the medical gaslighting which took place in my adolescence.
This internalised ableism still shows itself sporadically, but it’s typically something I can reframe and recognise as a systematic issue as opposed to my body being the issue.
However, the internalisation of the numerous experiences of medical gaslighting and societal ableism resulted in me doubting the severity of my symptoms, the extent of my health issues, clinging onto unrealistic hopes for recovery, and over exerting myself purely out of a sense of guilty and obligation because of the narrative I was receiving from medical professionals, who saw my suspected comorbidities of a product of psychosomatic pain from a troubled childhood, rather than the concerns we had of genetic disease.
For years I equated my chronic fatigue to being lazy, my connective tissue pain to being inactive (not as a result of my condition, but as a product of being unmotivated), and felt that no matter how hard I tried to get better, I pushed myself further back. A lack of professional intervention, adequate support, and an accurate diagnosis and subsequent treatment saw me go without the appropriate guidance, disability support in education, and social services provision to ensure my needs were sufficiently supported.
Furthermore, it also caused a heightened state of health anxiety, which is something I always felt due to my fear of the doctors and not being able to attend school. As a child I suffered from long, overdrawn colds and flu because my immunity was clearly compromised but flew under the radar.
However, as a teenager and young adult, I experienced, and continue to feel a sense of anxiety when I have upcoming appointments in my diary because I mentally feel the need to prepare myself for a battle and to be disbelieved or doubted when sharing the intimate and harsh realities of your health and symptoms with doctors.
This is both physically and emotionally taxing, because it means we often have to record our symptoms, derive potential symptomatic triggers, find our baseline and adjust our routines accordingly, and yet continue to rest and simultaneously stay productive to appease their narrow minded, and frankly ableist view of how you manage your condition and navigate everyday life.
A lot of us have experienced this medical trauma as a result of institutionalised ableism, and it’s absolutely unacceptable, however because of the current black and white diagnostic material and the gaps in healthcare for those who don’t fit within set criteria, we see these uneducated responses to patient’s lived experiences and realities.
So how do we ensure that we look after ourselves leading up to appointments?
Mentally preparing for appointments
These events can be nerve wracking, and frankly anxiety inducing – but it’s important to ensure you look after your mental health as best as possible during this time considering it’s under greater strain than usual.
In the lead up to any appointment, I have to remind myself to stay grounded and practice my affirmations, because as a disabled person I’ve had many dismissive or downright offensive remarks or accusations thrown my way in environments which are meant to help me or work with me as a service user to find the best treatment or means of support. To do so, I have found practicing affirmations is one of the best tools for consciously reminding myself that I’m advocating for myself, and that my feelings are indisputable.
- My feelings and symptoms are valid
- No matter how others may dispute or counter my reality, I am the one who has experienced it and I know best
- The ignorance of others doesn’t undermine my existence
- I am allowed to mourn over my loss of ability
- My condition and the development of it is not my fault, I am not to blame or demoralise
- If I feel a benefit from my mobility aids and supports, a professional has no right to remove them from me
- I don’t require recognition or validation from anyone else to advocate for myself
- I am allowed to fight for my rights, even though I shouldn’t have to
- When I doubt my symptoms, I am projecting my internalised ableism upon my physical form because of systematic ableism
- I am allowed to attain a second opinion and research my symptoms, condition, and possible treatments, or prevalent studies
- I am a smart, informed, and diligent individual who deserves equal opportunity, accommodation, support, and acceptance as an able bodied person
In addition to my affirmations, I like to prepare physically for appointments in enough time so I am not over exerting myself in effort to be prepared last minute, of course unless the appointment is scheduled within short notice. Aside from looking after myself and packing a small bag containing things that I would find useful to have both throughout my journey to the appointment, appropriate medication or supports etc, I like to remember to fulfil the following to ensure I best advocate for myself:
- Bring a support for brain fog and emotional support if possible
Sometimes it’s helpful to bring your carer or someone close to you who knows your medical history, as brain fog can cause confusion, an inability to accurately recollect information, and a poor intake of information you can receive from appointments
- List of things to discuss to keep yourself on track
Having a pre-prepared ‘to-do list’ of important topics or questions to voice to a professional can help you achieve the most from a consultation, as you can be as efficient and resourceful as possible. Don’t be afraid to ask your friends or family members if they think there are any pertinent questions or concerns which could be voiced, as you could have mentioned something pressing that sticks out to them
- Bring a symptom diary over a period of a few weeks
When you discuss the frequency of your symptoms and the exact symptoms you experience and the patterns which may/may not be present, it can be difficult to give an accurate estimate, and it’s also easy to overlook small details in the moment.
Therefore I always say to track symptoms for the month leading to your appointment and consider the following:
- Time of day in which symptoms appear
- The times you take your medication and potential allergenic ingredients (e.g. lactose)
- When you eat and potential allergens in the ingredients (e.g. gluten)
- Describe your symptoms (e.g. palpitations, sweating, and nausea)
- Whether you were stationary or active at the time (e.g. walking up the stairs)
- Track your bowel movements or episodes of incontinence if constipation, incontinence or diarrhoea is a symptom you experience
Finally, remind yourself that a second opinion is never too much to ask, ensure you practice your affirmations before and after the appointment, be open to joining support groups for those with chronic illness/disability, and research professionals in the area who you can contact through primary care services or directly for case advice if you are not getting anywhere with your current physician.
(Because of how mentally draining and potentially triggering dealing with, and navigating through experiences of medical gaslighting and ableism can be – I have listed a good few mental health support services I’d recommend saving the contact information for.)
Scope – disability support charity
Helpline: 0808 800 3333
Mind – mental health charity
Helpline: 0300 123 3393
Samaritans – suicide prevention charity
Helpline: 116 123
SHOUT – text service for mental health support
Text SHOUT to 85258
Papyrus – suicide prevention charity
(for 16-35 year olds/their concerned loved ones)
Helpline: 0800 068 41 41
Text: 07860 039 967