5 Things Rare & Chronic Illness Patients hope you will understand better after Covid-19


Covid-19, lockdown and self-isolation…. Buzzwords for 2021 globally and literal life-changing events that can neither be undone nor forgotten.


If there is one thing we can all learn from the Covid-19 Pandemic – it is COMPASSION. Compassion for the disadvantaged, for the elderly and for those at risk due to health complications. Compassion for our healthcare workers, our frontline emergency teams and our essential services providers. But mostly…. Compassion for those who have spent most of their lives living in a state of emergency, fighting an invisible illness which impacts their livelihoods and threatens their very survival EVERY. SINGLE. DAY.


Image Credit: Kayleigh Chapman


Whilst for most of the world’s population, the emergency action plans and ‘State of Disaster’ Laws and regulations took some getting used to, for patients with rare diseases and chronic illnesses, this was fairly standard procedure – just with an extra level of vigilance now required considering their already compromised immunity. As a means to look on the ‘bright side’ of Covid-19, we as an organisation (and all the patients and families we represent) hope that the pandemic will provide the following lessons to help the general public better understand the following:



1. What it’s like to have an “Invisible Illness”

It’s fair to say that during times of Covid-19, especially during the early stages of lockdown, there was a mental shift towards treating everyone as though they had Covid-19 (guilty until proven innocent basically) in order to subconsciously go against everything we’ve ever learnt – shaking hands or hugging as a form of greeting and touching surfaces and not sanitizing or washing hands immediately thereafter. We developed a defensive assumption that everyone was a potential threat to our health and extra caution was required to protect oneself.


For rare and chronically-ill patients, this overcautious behaviour that had previously been considered rude or anti-social became the norm – and not only accepted, but encouraged. It gives an idea of the level of awareness an immune-compromised individual requires when navigating life in the (now more obvious) unsterile environment in which we live and that people’s outward appearance (or lack of physical disability) shouldn’t be the basis for judgement.



2. The Social Stigma around Wearing a Mask

How ironic that prior to Covid-19, wearing a mask in public was a source of judgement – whereas these days not wearing one will provide you with the same level of judgement (if not greater).


For rare and chronically-ill patients, the onus was always on them to protect themselves from the potential threats to their health – as the minority in society, they would have to wear face masks to protect themselves from others. The result however, is that people would get defensive at the thought that you assumed their presence posed a risk – as though it was offensive or an insult.


Covid-19, we hope, has given everyone the insight that national health, and concern for our fellow humans, should be everyone’s responsibility. We don’t wear masks to protect ourselves – we wear them to protect those who are at risk.

Image Credit: Maryka Poley


3. What it’s like to fear the “Common Cold”

Considering the ambiguity of the symptoms and long-term effects of the Corona Virus, it was an illness many people feared contracting, simply due to the number of ‘unknowns’ associated with it – especially considering that victims didn’t have predefined characteristics or health profiles. The nay-sayers and conspiracy theorists would have you believe that Covid-19 is nothing more than another common flu strain for which global world leaders and health specialists have over-reacted at the detriment of the economy.


Regardless of opinion, we hope that that the initial hard lock-down and subsequent self-isolation measures have given the general public an idea of what it feels like to fear the common cold – a fear which rare patients live with daily. We hope parents understand why families of immune-compromised children judge so harshly when children are sent to school sick – even if for a ‘normal’ child the symptoms don’t seem “that bad”. We hope Covid-19 teaches people consideration for others – not just during Covid-19, but for always.


4. How Lonely Self-Isolation Is

For most, the primary reason why hard lockdown had such an immense negative impact (barring the financial impact obviously) was the forced separation from those who we care about and love most. It was emotionally draining to rationalize the fact that if we loved someone, the best thing we could do was stay away from them. We ask you, subsequent to this pandemic, to spare a thought for the friends, family and loved ones of rare patients who are forced to make this decision daily.


Many have compared quarantine or self-isolation to a prison sentence. 14 days without much human interaction, without the ability to simply head out and continue with your everyday lives and without mental preparation for just how lonely isolating is (especially for a breed that was designed to be social). This, sadly, is the reality for immune-compromised patients on a regular basis, and unlike during Covid-19, there are no debt-relief offers or measures on offer to accommodate these periods that impact their livelihoods frequently.


Image Credit: Ruhan Adendorff


5. How Mentally Exhausting waiting for a Diagnosis is

The initial Covid-19 tests had a 48-hour waiting period for results – and for someone who feared infection (and the subsequent concerns which accompanied it such as what symptoms they might experience, long-term effects and possibly exposing others) – it felt like a lifetime.


In times of uncertainty, human psychology has us fearing the worst, enacting every possibly scenario and plaguing our thoughts to the point of sheer mental exhaustion. Now imagine feeling like that for months, if not years on end whilst waiting for a diagnosis. Whilst being diagnosed with a rare or chronic illness is right up there on the list of things you never want to experience, there is a form of peace and calm about knowing the prognosis and the treatment plan ahead. It might be acceptance, or just the ability to plan and know that there is a path forward (whether good or bad), but it is far less taxing emotionally than living in a state of permanent uncertainty.



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