How is your physical health? How is your mental and emotional health? Do you rely on the NHS for support, do you use private healthcare, or do you simply ignore it and hope it goes away?
These are questions I had to ask myself recently. I have been documenting my struggle with NHS care for my rare congenital disorder. I have a condition called Lymphodoema Distichiasis. It means I have a double row of eyelashes that turn inwards and scratch my eyes, and I am at risk of blood clots and swollen legs. It also means there is a small risk of heart problems, although these are rare and vague possibilities. There is very little research about patients with my condition, and probably only a handful of doctors who know about it. Certainly, most of the doctors that have treated me throughout my life seem clueless about how to treat it. I have gradually slid down the waiting list at my NHS hospital, so I get the bare minimum of appointments and not much help.
I do not blame the NHS for this problem. I am the patient here, and it is my responsibility to find a way to live with my condition. I cannot afford private healthcare, although I had the luxury of it throughout childhood due to my dad’s workplace benefits. His employer offered a healthcare plan and he used it for me and my brother. We were discharged at the age of sixteen when our condition was labelled as chronic, and the private healthcare company would no longer pay for treatment. Since then, we have been at the mercy of the NHS. My journey has been tumultuous, to say the least.
For most of the past twelve months I have suffered severe Dry Eye Syndrome that leaves me in pain, feeling irritable, exhausted and like I literally want to rip my eyeballs from their sockets to try and stop the discomfort and pain. I have also been experiencing sporadic chest pains, increased heart rate, and soreness in my shoulders, neck and back. I visited the emergency department for help and since then have had a couple of CT scans to check on a lung nodule that was discovered. I was ordered to have an ECG by my new ophthalmologist, and I also had to wait for an ECHO scan so that my heart could be monitored for this potential rare condition. I have had to fight hard for these scans and tests. You would think that when a doctor requests them, they are processed quickly. Far from it! I have to wait a couple of weeks, phone my GP surgery, explain what I’m waiting for and why, usually wait for a call back from my GP, and eventually chase up my appointments. I also have to chase the secretary for my ophthalmologist, or phone the hospital admissions department.
All of this has led me to self-diagnose stress and mild anxiety. It is exhausting having to chase appointments when you already feel ill. Now I feel anxious every time I even think about contacting a medical professional. They have conditioned me to prepare for battle. My fight response goes on high alert, leaving me feeling even more exhausted and tearful once I have chased whichever appointment or treatment I am waiting for at the time. I now need to organise my own healthcare plan. I am using reiki self-healing meditation and mindfulness to take the edge off, but since I have been dealing with all of this for the past twenty years or more, it will take time to change my physical and emotional responses to something that should be helping, not hindering.
What are your experiences with healthcare, for both physical and mental health?
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