I joined the social network for A Chronic Voice earlier this year because I needed to find people who understand what life is like with chronic pain. Today I have written a post using the August link-up prompts, to show my experience of living with a chronic pain disorder. Click here to find other blog posts from fellow chronic pain sufferers, or #spoonies as we call ourselves online.

I have a congenital eye disorder, with a couple of related disorders, and my days always begin with an assessment of how my eyes feel when I wake up. Are they dry this morning? Has my overnight eye ointment soaked in completely, or is there a greasy residue around my eyes? Do I have stabbing pains from eyelashes that are turning in and scratching my corneas? Do I need to use my tweezers and remove ingrowing eyelashes? Do I need more eyedrops, an eye bath, or simply to clean my glasses a bit more? That’s a lot of questions early in the morning, and yet that is my routine, albeit something I have never consciously considered. Here are 5 ways to understand my chronic pain condition:

1, Capturing – I wanted to share photos of myself with symptoms of Lymphodoema Distichiasis (ingrowing eyelashes). I have endured many surgical procedures throughout my life, most of them before I was 16 years old. Back then my parents didn’t take photos of me wearing eye patches and bandages, because of course all they wanted was for their little girl to feel better and for the pain to stop. I tried to take a few selfies about ten years ago, but since the development of smart phone technology, my surgeries have dropped off because the doctors cannot do any more for me. For now, here is a photo from my most invasive eye surgery, eyelid rotation, that I had in 2008:

2, Financing – I dread to think how much I have cost the NHS over recent years. Throughout my childhood I received expensive medical treatment through a private healthcare company funded through my dad’s job. He worked for JCB, a famous digger manufacturer, and they offered family healthcare that came in very useful for both me and my brother, who has the same congenital eye condition. But when I reached the age of 16, the healthcare company decided that since my condition was now labelled “chronic,” they could no longer fund my treatment, and so they sent me back to the NHS. At this stage in my treatment, there is no money to fund research for such a rare health condition, and since it is not life threatening and I am not likely to go blind from it, I am pushed to the background of priorities. I have learned to manage the pain by myself through a combination of lubricating ointments, gels and eyedrops, meditation and diet management.

3, Controlling – Now there is a loaded word! I cannot control my eye condition. I can try to manage it. I know that if I go to bed without using overnight eye ointment, I will wake up in pain the next morning. I know that if I don’t get enough sleep, I will suffer the next day because my eyes will be dry, sore and gritty. I have no control over the growth of eyelashes on the inside of my eyelids, and as much as the NHS and the private medical teams tried to stop them from growing again, nothing worked. They are hair follicles, when all is said and done, and I suppose only the most drastic of treatments would stop them from growing.

4, Exchanging – Do I wish I could exchange this painful and chronic eye condition? Yes! I wish I knew what it was like to have healthy eyes that could see clearly and not be hurt by bright light, white clouds, or flashes of colour. I wish I could have healthy eyes that allowed me to write for longer, where I didn’t have to take a break regularly to pour in the eyedrops. But then I would not like to exchange my eye condition for some of the other chronic pain conditions that I witness in my family and friends. I have exchanged my attitude towards my eye condition. I have it, it is a part of me, and I must learn to live with it as cheerfully as possible.

5, Motivating – I wonder sometimes if I bordered on mild depression as a teenager partly due to my chronic eye condition. For all my regular hospital visits and my 12+ surgeries throughout childhood, the doctors and my parents never made a fuss about me. They acted like everything was normal and that I should just carry on as if nothing had happened. They wouldn’t have understood the level of pain I felt, and I couldn’t articulate it. Back then, in the 1990s, people didn’t talk about mental health, and so I could not understand all of these extreme and upsetting emotions I felt. I couldn’t wear lots of make-up like my teenage friends, because it hurt my eyes. I had to wear thick, horrible glasses to correct my vision. But that changed as I grew older, and technology improved. I learned to be thankful for my glasses that enabled me to see almost the same as someone with 100% vision. I learned to live with my chronic pain condition.

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