Time To Be Brave (and honest!!)

The story of Laura

So, today is my birthday, I am 38 years old and today is also ‘Rare Illness Day 2018’ so it feels right that I share this now. It’s only taken me about 15 years to open my eyes and accept I am one of the rare ones that got two rare illnesses that most of you probably (and hopefully) don’t know about. I do however know that so many of you will have illnesses, both mental and physical, to cope with, either yourselves or with someone you love and so I hope this helps in some way. Don’t worry, I don’t want to discuss the ins and outs of it all in the playground or during coffee dates, I don’t want anyone to feel sorry for me or even acknowledge they have read this but if I can help someone in anyway dealing with a rare (or not rare!) illness then I would be more than happy to try! 

I was always a bit of a poorly baby, from 8 months I suffered from unexplained temperatures and illnesses I could never really be made better from. Looking back now it all make sense, why I couldn’t get better, why simple illnesses lasted so long. I was always the ‘ill’ one, and I hated it.  I just wanted a normal life and for a while that is what I had. I went to university and studied Media Production, I came home and got a job in marketing and advertising. I did pretty well, bought a house in my early 20’s, went out, had fun, made some pretty bad decisions and some pretty good ones but then it all went wrong. The diseases that had been hiding there all the time, occasionally making themselves felt it various painful, exhausting, yet hide-able ways, suddenly took hold in a major way. I just couldn’t get better. I went from being able to work 13 hour days to not being able to work at all. I had to give up my job and almost couldn’t afford my house anymore. It took months and months to get a diagnoses, as that’s the problem with rare illnesses, you have to get lucky and find a doctor that works it out. I have been blessed with incredible doctors, nurses, consultants and specialists who worked it out for me, I am sure they have saved me many times and looking back now I can see how close I have come to disaster.  I was eventually diagnosed with Bechets Syndrome and then Addisons Disease. I tried medication after medication, none of which really worked and most which made me worse. Finally one of my amazing consultants fought to get me a biological treatment which I now have every 8 weeks and which doesn’t come with the difficult side effects of the others. It lowers my immune system and keeps the Bechets fairly under control. This does make me susceptible to infection but so far that has been a small price to pay.  At the start of this year however my treatment lowered my immune system a bit too much and I ended up in hospital with pneumonia. The scary thing was I didn’t really think I felt that ill. I didn’t want to go to the doctor and I knew just how stretched A+E are, along with the entire NHS and I didn’t want to make it worse for them, but my mum knew best and took me anyway. The hardest thing is knowing that I actually have no idea what it feels like to be well. I am so used to feeling ill and adjusting to it that I actually didn’t think there was much wrong with me when in fact I was pretty poorly. I was in hospital 5 days and the worst thing of all was being away from my little girl. That hurt more than anything physical. I hated not being with her and not being in control, but you know what, she was ok and everything else at home kept going just fine.  I know there will be more bad times, hospital stays and complications but I’m not scared now about what will happen at home,  I have such a strong support network that I can give myself the time to get stronger and as better as I can get. My little girl is my mini-me, we are always together and being away from her will always be heart-breaking, but she is strong and resilient and, sadly, so used to hospitals and all that come with them that she isn’t scared by them. She happily sat with me for 7 hours one day, playing, chatting, endlessly going to the shop, helping the nurses and making me feel better and then went home to Daddy, Nanna and Da and got looked after and loved just as well as I can do. Being ill doesn’t change me as her mummy, we just adapt and love each other even more. Letting my husband, parents, family and friends look after and love her doesn’t take away from my role as her mummy, it just enriches her life even more. No child can ever have enough love. Whatever happens and wherever I am, she will always be my mini-me!

I thought hiding my illnesses made me brave and allowed me to be free to be the person I thought I wanted to be.  In fact it was the opposite, I was hiding them because of fear, fear and embarrassment. I was scared of what people would think and embarrassed that my body kept failing me. These illnesses are painful and debilitating, your body finds ever different ways to break and offers ever different questions that often can’t be answered. That’s the problem with invisible and rare illnesses, you can hide them and pretend nothing is wrong. I thought keeping it to myself gave me freedom but it didn’t, it caged me, it suffocated and drowned me. I had to carry on when I almost couldn’t, I had to pretend everything was normal when it was anything but. Looking back now it almost feels like a lie, and the problem with lies is that they become ever harder to keep up. I don’t mean a lie designed to hurt other people, more like to save other people, from having to know what to say to me or having to worry about me, from having to help me or feel sorry for me. God, that was one of the biggest fears, I was so afraid of people feeling sorry for me! I wanted to be the person that I was hoping they thought I was, strong and capable, getting on with life, being too busy, a bit too stressed, juggling too many balls, striving for everything to be perfect. Now though, by sharing this, I’m beginning to feel a bit of freedom and relief. Not having to pretend everything is ok anymore, admitting I can’t always cope and finally asking for help when I need it. Nobody is perfect, everyone has their difficulties and challenges, their pain and fears. When it comes to me and my illnesses I’m afraid I wasn’t very honest and now I can see how unhelpful this was, both to myself, people who care about me and to other people who do suffer or who may come to suffer from a rare illness. 1 in 17 people, or 7% of the population, will be affected by a rare illness at some point in their lives. This means there are approximately 3.5 million people in the UK and 30 million people across Europe are suffering from one. In the UK, a single rare disease could be affecting up to about 30,000 people. This means that actually we all probably know someone with a rare illness or maybe you have one yourself, I am just hoping that being more open and honest about mine may help someone feel better about theirs! The more we talk about it and raise awareness, the more likely it is that eventually a cure could be found and if that could happen, for even one rare illness, then that would be amazing!

I suppose what I want to say to anyone who is suffering with and fighting against ANY illness, rare or not, is be free to live with your illness however you want to. Don’t let it define you or stop you. Don’t become ‘the ill one’ unless that’s how you actively choose to live. Be privately brave or loudly bloody angry. Fight on you own or take everyone along for the ride. Be stubborn and don’t ask for help if that gives you the drive to fight or be sick and tired and ask for help from every corner if that gets you through the day. Talk about every painful, humiliating, confusing and frightening symptom you get if that eases your mind, or helps with the pain, or keep it to yourself if that helps you forget, even for a minute, that you have a battle to face. Be kind to yourself though, be aware that you aren’t alone, and be as strong as you can be. I know now I will never be just these illnesses, I am so much more. I am beginning to accept that they will define my life in many ways and they will place obstacles and challenges in my way but I am determined to be more alive despite this. I always thought I wasn’t letting them get in my way but my ignoring them and not taking the care of myself I needed I was in fact allowing them to do just that. I will be kinder to myself now, I will rest more and ask for help. Having a strong body doesn’t make a strong person nor does having a strong mind. To me, honesty, love, kindness and courage, in whatever form that takes, makes a strong person. Admitting you are ill, tired, scared or confused doesn’t make us weak, hiding from it does. It is not admitting it that weakens us, both physically and mentally. We all need someone or something to lean on sometimes, or maybe all the time.

One thing I am sure of though is that I’m not angry at being ill, I don’t feel bitter that my life isn’t what I imagined it to be because actually it is so much more. Having these illnesses has made me realise how lucky I really am. Every day is a blessing and I intend now to have my eyes wide open to that. My doctors told me I would never have a baby, but I did, and yes it was hugely difficult in so many ways but my god, I only need to look at her to see the point in it all. She illuminates my life in every way, she is every bit of hope I ever had and every bit of courage I ever need. Her future is my future and I intend to be here a very long time to enjoy it with her. My family is my strength and my friends are my inspiration. I know now that they will not judge me or feel differently about me because of an illness and I feel sure I won’t become just ‘the ill one’ ever again. I’m just me and like everyone else I’m just doing the very best I can.

Christy, my fellow autoimmune sister, you gave me the final shove I needed to finish this and be brave enough to press post! So thank you, you are a strong, beautiful woman dealing with your own battles with amazing bravery and grace.

 

*Find others with Behçet’s Disease on RareConnect, the online platform for people affected by rare diseases.