Do you live with underlying health challenges, maybe something that requires medication, hospital treatment, regular contact with doctors and nurses? Me too.
I have come to the conclusion that our NHS is not designed to help. It is designed to try and save lives when we reach crisis point. In my experience, medical professionals are not interested in helping if you have concerns about your health. They are only interested in working on you once the situation becomes serious. Now, I’m sure nobody would admit to this fact, and please correct me if I’m wrong, but that is my lived experience.
I have been trying to get help with my rare congenital disorder for the past ten years or more. Throughout my twenties I was quite blasé about it. I attended my hospital appointments, I used the ointments and eyedrops that were prescribed, and I was treated sporadically for other illnesses as and when they appeared. Then I reached an age where I wanted to have children, so I requested genetic testing to see if I would pass on my condition to my babies. There was a 50/50 chance of this happening, but fortunately both my children do not appear to have inherited the recessive gene that I carry. Phew!
Since having children I have not been able to fully focus on my condition. Whenever I asked doctors about the heart defect possibilities they dismissed my concerns and made me feel like I was making a fuss about nothing. So I gave up chasing. I was busy trying to cope with chronic eye pain anyway, trying a large variety of eyedrops and ointments, experimental medications, and occasional day surgeries to remove ingrowing eyelashes. I am now reaching what I consider crisis point in my mental and emotional health. It is exhausting having to repeat myself and explain my illness to receptionists, administrators, nurses and new doctors. It is demoralising when they look at me blankly and then tell me I am fine, it won’t kill me, get on with it. OK, they don’t use those exact words, but that is what I infer from their demeanor and response to my concerns.
I feel something is not quite right. I know I am experiencing clinical stress. But because it has not brought me to the point of complete collapse and I have not been rushed to hospital in an ambulance, the medical professionals dismiss me and tell to get over it. Now my only option is selfcare. I am practicing mindfulness, reiki self-healing, trying to regulate my diet and exercise, and doing what I can to find appropriate alternative treatments. Will I succeed in preventing my body from developing serious illness? Time will tell.
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