"It causes misery, terrible pain, infertility" - Readers discuss a need for more awareness for conditions and illnesses
In a period of time where the damage caused by Covid-19 has dominated the headlines, many could believe that other conditions or illnesses do not get the attention or awareness that they deserve. We asked The Star readers what their thoughts were...
And, this is what they had to say:
"Hypothyroidism, robs you of your energy, makes gaining weight so easy but losing it so very hard , aching joints and mood swings to name just a few things associated with the illness but doctors don't know much about it and think taking levothyroxin solves everything, it doesn’t” says Gale Lyons, and many people agreed with her response with many detailing how it has impacted their lives. Something that Hilary Osborn agreed with, saying; “Hypothyrodism unseen but limits how well you can function physically . Life long and incurable only treatable. Als can be underlying cause of many other illnesses.”
Another illness (and often a life long condition), Endometriosis is an exceptionally uncomfortable condition that many women suffer from — as many as 1 in 10 women are affected, and it can also affect fertility amongst other things. Jean Hepplestone highlighted the misery that it can inflict; “It causes misery, terrible pain, infertility and can make the lives of women unbearable.”
“Phenylketonuria known as PKU”, says Keith White; “It affects 1 in 10,000 of the uk population yet is unheard of by most people. A life long condition If not detected at birth will cause permanent mental and physical disability. It is controlled by the patient being put on a birth to death severely restrictive diet. Most GP’s do not have a patient within their practice and those who do not really understand the condition fully and it’s consequences for life management.”
There are other conditions that we are familiar with but less so the stigma or support that accompanies such conditions, such as “ME / fibromyalgia, a very medically ignored illness” says Sally Hurst, in this case both are similar but “Fibromyalgia is a similar illness but not the same” said Naomi Burton. Helen Lilly said that she has; “been ill with this for 18 years, the majority of which i've spent housebound and dealing with constant chronic pain and very little energy to do anything, It's caused me to suffer from depression, anxiety, panic attacks” and so much more besides. But it’s lesser understood in the wider medical world according to reader testimonies.
One of the other commonly known but frequently misunderstood conditions is “Cerebral Palsy”, says Suzan Ogden; “So much discrimination around this condition. My daughter says that you have to get used to being called names because that’s how it is.” Most important to note here, is that nobody should have to get used to being called names over any condition.
Trigeminal neuralgia is a chronic pain condition related to nerves that can cause immense pain from things as innocuous as brushing your teeth or washing your face. Emma Stroud says that she has; “suffered it for nearly 15 month and at its worse it makes you feel very depressed. It's that severe it's also known as the ‘Suicide disease”, Emma isn’t alone in this struggle with a number of our readers also afflicted with the same incredibly painful condition.
Autism is a hugely misunderstood but increasingly common spectrum disorder that more of us are much more aware of but often lack the capacity to really understand how difficult it can be for both the person with the condition and those who care for or are related to. Something Sarah Naylor spoke about when she intimated that she was; “sick and tired of people staring and tutting at my boy. He’s not a freak show the the comments of “control your kid” and “sort your kid out” aren’t at all helpful.” It’s a shame how initially judgemental we can be without having a deeper understanding of how things may be perceived or are actually unfolding in any given moment. Brooke Fothergill agreed with Sarah, saying; “spot on! I just wish schools had more training on the care and acceptance of autistic children. Something that’s very lacking!”
Deafness is another condition that many have, and one that can be a blight on communication, particularly right now says Lindsay Green; “Deafness esp with the current masks situation. We aren’t ignorant or awkward but we cannot lip read thru them!”
There were a multitude of other conditions and illnesses mentioned as well, such as “Pre Menstrual Dysphoric Disorder #PMDD”, “Hashimotos Disease and Psoriasis”, “Separation Anxiety” (apt in the current state of things), Menopause, Osteogenesis imperfecta, Motor Neurone Disease, Crohns and colitis and so many more.
Unfortunately we were unable to include every condition mentioned but it’s very apparent that we feel that a lot more work needs to be done to raise awareness around a plethora of conditions. Hopefully, as we begin to emerge from under the cloud of Covid/Coronavirus, we can find a means of better supporting those with hitherto unheard of conditions alongside those we’re already aware of. In the meantime, we need to try and ensure that we’re kinder, more patient, and receptive (if not always cognisant) of the unseen differences (and battles) that people may have or be going through. We can never truly understand someone elses struggles.