There she is, the girl who believes there is something wrong with her.

The girl with what is it again, fibro something.

The girl who is ‘ill’ or so she says.

It is me, I am the girl the gossips are speaking about, the girl the nosey neighbours interrogate as they cant quite understand how at the tender age of thirty two, (update -now thirty four) I am still living at home with my mum (update – yes still living at home). Or the fact that at I am unable to work and am only just about able to rear my head out the door from time to time. She says she’s ill they remark but there doesn’t seem to be anything wrong with her. She doesn’t look ill, she speaks politely and dresses nicely, it must be all in her head. So in some ways you could say she is ill, mentally of course and not physically like she believes. Oh how little do they know.

Chronic illness has been part of my life for as long as I can remember, in fact there are times where I cant even remember the days when I wasn’t ill. I was diagnosed with kinetic Tourette Syndrome at the age of 18 and in my early twenties I had a freak accident which caused a lot of damage to my body leading to a diagnosis of fibromyalgia and ME/CFS in my late twenties. I then received a further diagnosis of polycystic ovary syndrome (PCOS) at the age of 31, and most recently a diagnosis of UCTD at 33, so like I said chronic illness has been a part of me for all my adult life.

I have always been a self-conscious individual, someone who enjoyed the invisible life, never wanting to make a fuss. Nevertheless before fibro and ME/CFS, I was doing well in life. I had managed to obtain my degree in psychology despite my accident and I was doing well in a successful career in HR. I was making good money, I was building a life and then I became ill. Becoming ill I lost everything from my job to my financial security, my future prospects to who I was a person. Suddenly I was thrown into this world of uncertainty and constant cycles of ill health, making one step forward and taking two steps back.

I was grieving the life I once knew but more than that I was grieving the life I had planned. They say there are five stages of grief; denial, anger, sadness, bargaining and acceptance and boy did I drag each one out, unable to let myself get to that acceptance stage for fear that once I got there it was as good as saying I had given up.

I was in denial for many years believing my diagnosis was wrong whilst experiencing bursts of anger and sadness, comparing myself to everyone around me who were living their lives whilst mine was passing me by. I researched my conditions inside out and whilst it definitely helped me understand my body more it didn’t help me understand my limitations. So it was here I went into the bargaining stage and convinced myself that if I made slight changes I could go back to work and that’s exactly what I did. I changed my workplace, my hours, the level of work I was doing and I pushed and pushed trying to get myself back to a life I believed was right for me.

Forcing myself back to work, albeit a new environment, I actually made myself much worse rather than better but whilst my body was a wreck, it was my mind that was shattered the most. I was in turmoil mentally because it was here in this moment that I realised my life couldn’t be the same again, not if I wanted to stay as healthy as possible. Suddenly the life I had was gone and working especially at the level I was at couldn’t happen anymore and the future I had planned was up in flames and I was lost.

Where I am currently with my health and how it is viewed would differ slightly depending on who in my life you spoke to; some people may say I still dip in the bargaining pool but I am predominately in the acceptance stage. Acceptance is an extremely difficult pill to swallow because in order to move on you need to let go. Letting go has led me to where I am now; putting my health first and listening to what my body actually needs.

However it’s through putting my health first that I have found myself in the situation whereby most people only see my illnesses and not me. The neighbours gossip, my friends have disappeared and even people who have genuine concern about me and my life, only ask me questions regarding my health like that is all I am; one big medical issue.

I don’t blame people for only seeing my illnesses and not me because at this moment in time I have no job, no partner and no children. Plus with fibro and CFS my hobbies are dependent on my body’s ability to co-operate and therefore consist of low key things I can do on my own to minimise the impact on my body. Therefore the only consistent thing in my life is my chronic illness.

Nonetheless I am more than an illness, a condition, a medical issue and a disease. Although my future may no longer to be able to be or look like it once did, I still have dreams and aspirations. I still have hopes and I am still a person. Though at times it is not just other people but myself that I have to remind of that.

My top tips for remembering that you are more than just an illness:

• Reconnect with hobbies or passions you may have forgotten – Being chronically ill you can find yourself constantly battling symptoms as well as treatments and different ways of managing your condition/s, all of which can be very consuming. Spending time on activities you enjoy can give you some respite if only mentally from the anguish of your day to day struggles. It can also help you to focus on something that isn’t just about being ill.

• Create a ‘this is me’ chart – To remember who you are as a person it can help to ask yourself specific questions to reconnect with yourself e.g. what is my favourite colour, my favourite type of food and write it down. Writing things down can sometimes make you connect more as you can see it in front of you down on paper, exactly who you are and what makes you special. You could even use it as an opportunity to tune into your creative side by decorating the paper in any way you want from bright colours to magazine cut-outs, anything that when you look back at it makes you smile and makes you think ‘this is me’.

• Set yourself (small) goals – Chronic illness has a tendency to steal away your dreams and as a result make you feel down, depressed and at times a failure. A big factor in happy peoples’ lives is feeling a sense of achievement. Setting small achievable goals is a way for you to feel you are indeed achieving something. Whether it be completing a form of exercise every other day or reading a chapter of a book each night, achieving your goals will make you feel good about yourself and help you to see that you illness doesn’t control everything in your life.

• Challenge negative opinions – This can be quite a tricky one as it depends on the person, situation and intention. Nevertheless if someone’s behaviour towards you is upsetting maybe talk to them about it. A lot of time ignorance surrounding illness is a result of people not understanding your illness, especially invisible illness. They can’t see what is wrong with you visually therefore they often interpret that as there is maybe something wrong with you mentally and/or emotionally. Encourage them to ask questions and maybe then you can explain how it makes you feel when people don’t see you beyond the health issues. Hopefully speaking honestly and openly will encourage others to think about their actions towards you and if not move on to my next bullet point.

• Believe you are more than your illness – A lot of the time negativity comes from our own way of thinking which can be then be fuelled by others thoughts and perceptions. Sometimes you come across people in life who just don’t understand you no matter how much you explain but that’s ok. Is it annoying? Yes, but is ok because you don’t need their acceptance you need your own. The most important thing is how you see yourself and not how other people see you. You need to appreciate your own worth and regardless of what other people think or say, once you start to see yourself as a person first and a person who has an illness second then everything will become much easier.