What can I do

I started this blog 7 years ago for two main reasons.

This article contains strong language (which may be unsuitable for children), mature themes (definitely unsuitable for children), acronyms and many words (which may be unsuitable for those easily bored).

I started this blog 7 years ago for two main reasons.

1. I wanted to other people to know what it was like living with a serious, incurable condition that impacts on every aspect of your life because I feal with so many misconceptions, criticism and misunderstanding on a daily basis.

2. I wanted to contribute something and help. I didn’t have money or time to give – I couldn’t donate or volunteer at a charity (something I’ve done in the past), but I could help raise awareness for a number of grocely misunderstood and underdiagnosed conditions – Ehlers-Danlos/Joint Hypermobility Syndrome, POTS, APD, Brittle Asthma Type 2 (now called something else vague), refractory chronic migraine.

I am the person who walks into a hospital and is immediately overwhelmed with an influx of medical students coming to observe because it isn’t every day you see a spontaneous dislocation that reduces then dislocations every time I move my arm.

Or an experienced anaesthetist who can’t get a simple epidural inserted (without any local) because the vertebra in my spine keep moving and get in the way.

Or watch the best surgeon on call have yet another go at putting in stitches that keep tearing out.

Or observe what happens when an oesophagus dislocates when I cough. I could write a book about my weird hospital experiences over the last three decades, but that would defeat the object.

Underneath all of these things is a real person. Inbetween all of these things, I look just like everybody else. So much so that the most pervasive criticism I have encountered my whole life is disbelief. Until one of these things happen in front of someone, at which point the second most common issue comes up – overkill.

I spend my life being knocked back and forth between these two attitudes, constantly. As someone with serious OCD related to people and how people think and behave, this has caused me some extreme discomfort, distress and instability over the years.

I do not want to be that person. I don’t want to be in the spotlight. I don’t want attention. I don’t want to be singled out. I don’t want to be an inspiration or an example. I also don’t want to be told that I am crazy and suffering from delusions of grandeur.

Middle ground people.

Underneath this tug of war there is another more sinister conflict. That between the rare condition experts and the health and care professionals unfamiliar with rare conditions. Use a wheelchair – don’t use a wheelchair. Walk more – walk less. Rest more – move more. Work through the pain – don’t take any risks. Focus on what you can do – focus on what you can’t do. Do as much as you can – don’t do anything that may hurt.

I have followed advice from both sides. I attempted to balance the two often opposing forces by combining bits from both. It is demoralizing and seemingly impossible. Which led me to ignore all advice. That didn’t work either. I had a complete breakdown. Something that really didn’t work out well for me.

Then I had an epiphany.


None of these opposing forces are internal. I know what I want from life. I know what I am capable of. I know that I do best when I take risks and push the boundaries. I know what helps me and what doesn’t. I know that I care little about judgments, sanctions or punishments deep down. I know more about my condition than most medical professionals. I know more about myself than anyone else.

I have worked very hard to gain the knowledge that I have. I have read almost every research paper, study and book on topics that affect my health, without going crazy – except for that one time when I thought a rash caused by the flu jab was flesh eating bacteria rapidly devouring me alive.

I formally studied psychology, anatomy and physiology and spent 2 years learning advanced palpation and physical assessment skills. I’ve studied x-rays of my dislocations, to learn exactly how my joints like to move out of place and I’ve experiment with various types of reduction (both medical and made up on the spot) to figure out how to fix it most efficiently.

I have an excellent asthma team, I have an excellent rheumatologist and with that support in place, I know how to take care of myself. I can’t always do it and I do not know everything. I know that. I am happy to learn new tricks and I’m open to experimentation – if you don’t change, there is no chance to improve – but I have no need to go backwards or do things I know is not recommended.

Maybe it is time I started listening to myself and not to those pesky voices I hear in my head (not crazy, really!) of other people butting in. Do this, don’t do this. Be like this, look sicker (thanks you soft EDS glowy skin), stop smiling so much.

I like smiling. I enjoy laughing. I also cry easily and ask for a lot of hugs in a day. I get depressed. I get suicidal. I have scars on my arms and other places that tell a much sadder story of a much lonier and more vulnerable young woman.

I do not want to spend my life whiling the hours away being too tired, too sick, too sad or in too much pain to get the most out of life.

Been there, done that. Fuck that.

What can I do? A great many things.

Life gets complicated, but in the end, there should always be this one question at the heart of every problem: “What can I do?”

What can I do to contribute, to help, to fix it, to make it better?”

That’s the kind of person I want to be. A fixer, a solver, a possitive attitude. Can’t be that hard and sure as hell beats leaving it up to everyone else but me.


2 thoughts on “What can I do

  1. Hi Lily

    The world needs to be a more listening, emphatic place. Medical people forget they’re treating humans – individuals. Is the human race becoming more hardened? I, too, have encountered some not very desirable types, so called health care professionals who aren’t sincerely doing their jobs. Yes, people make mistakes, that’s normal and how things are. But blatant lies to cover their backs, to suit their own agenda? Being laughed at, ridiculed – assuming to know you (they don’t), even called a liar? The ego gets in the way – it’s about power, money. What happened to truly passionate, caring health professionals? In my experience I haven’t met many. The most seem to be nurses or self employed therapists.

    I feel for you, Lily. Keep that spirit of yours burning bright.

    ((( Sending you hugs from Norfolk )))


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