It’s a building for sick people.

Hospitals are the worst places to be when you’re feeling ill. Usually when you’re in any way ‘not quite right’ all you want to do is curl up in your own comfy bed, with easy access to guilty pleasure tv shows and be left alone. Sometimes however you need some extra help and this might be from the doctors at your nearest hospital.

If you have the unfortunate need to come in through A&E, then I offer my sincerest condolences to you. Whether it’s from an accident or illness, you try your best to make yourself look presentable, you wear your best pyjamas, or you try to hide as much of the blood that is dripping from your hand/nose/general body. You register yourself at reception, trying your best to look as ill as possible, because the receptionist might just have the power to bump you up the list. Sometimes you need someone else to give your details, perhaps there’s too much blood pumping out of you to concentrate properly. Then, you turn and look at the waiting area, choosing where you want to sit as quickly as possible, while avoiding the eyes of judgment from the gallery, ‘What’s wrong with her?’ ‘ She looks awful’ ‘ She doesn’t look as bad as me.’

You sit and wait. You become one of the judges as more people file miserably in, you silently question the people sitting laughing and joking, do they really need to be here if they’re well enough to sit chatting happily?

Then the triage nurse comes out. Triage means to ‘sort’ and this is your chance to earn your place at the top of Schindler’s list. If it’s an invisible problem, you need to amplify how ill you feel with many superlative phrases, as the obvious ‘bones sticking out of limbs’ cases are usually considered more urgent. She takes your blood pressure and temperature, which you hope will show up something, just so you’re treated more quickly. You’re asked for to rate your pain between one and ten, this for me is the hardest part. I am now almost always in pain, so for me to be in A&E it is really serious, but I still hear myself saying ‘Oh it’s about a six’ at the very moment when I need to be honest and not a martyr. Whatever number you choose, this is duly noted and then the nurse makes a decision which will determine potentially the next 12 hours of your life. What colour is your case assigned to. For us in Ireland, if you’re assigned to orange, your case is serious and in need of medical attention as soon as possible. Good luck if you’re green, say goodbye to at least a night as you’re considered bottom of the priority list. The triage nurse is however permitted to administer pain relief, so at least if you’re sent back out to the dreaded waiting room, it might be more enjoyable than before.

Whether you’re brought straight through behind the green curtain of A&E, or called hours later, you quickly learn there’s no wizard waiting to fix you up and send you on your way. It’s chaos, no matter what time you enter. There’s never enough trolleys, so there’s lines of chairs as well, assigned to numbers so the doctors know how to find their patients. There’s two types of doctors, A&E doctors are the ones who pick out your file from the colour coded folders on the wall. They are your first response team, they assess you, perhaps are able to treat you if it’s something superficial like a wound. If it’s a deeper underlying problem, then they will refer you to the medical doctors. This is by no means the end of your torture. Depending on another system, the medical doctor may pop around to see you in a few hours, or the following day. You may continue to get pain relief from harried nurses walking swiftly by, but you might not see a doctor for hours. Even with that visit, you might be sent home with advice, and a prescription, or told you need to be admitted. In Ireland, there is a shortage of beds so you may well be left for a full day, on a chair and then promoted to a trolley, before finally hearing the those magic words, “We’ve found a bed for you.” This means within hours, you might get some much deprived sleep in a yet undisclosed ward somewhere in the hospital. A&E is noisy. What’s more, it’s always noisy. They may turn the lights down during the ‘night’ but nothing else stops.

At some point, you are eventually told you’re being moved to a ward, and you silently rejoice to be leaving the headache of A&E behind, when you remember that you’re still in hospital, the nightmare isn’t quite over yet.

Life has been the death of me.

I used to know a girl.

A girl with dark brown eyes and long hair. She grew up very sporty and fit, and was quick to laugh. She loved to dance. School work came easily to her and she strove to read as much as possible. She loved learning new facts and remembered them months after reading them once. She loves doing quizzes to test herself.

She was strong willed and stubborn, sometimes to her detriment. She didn’t need anyone with her to do things, sometimes she’d even prefer to do things on her own. To new people she was pleasant, although very quiet, and many never saw more than that. She didn’t often let people in, maybe one or two people at a time in her life, but she moved on swiftly. She may have collected souvenirs from travelling but she never collected friends. Most of the time she thought it was a risk to become close to someone, and never bothered with a boyfriend-it sounded like work. Trying to make someone else happy, she never recognised that maybe a boyfriend would add to her life, not restrain it.

She had a great yearning to travel, to see as much of the world as possible, and not necessarily in style. She hoped to combine her college degree with travelling the globe as part of her job. She saw being happy in life more important than earning huge money and being miserable in a stressful job. Like testing herself at quizzes, she wanted to be challenged at work, for each day to be different. She wanted to make herself proud.

Then one day this girl became ill. She had been sick before, but this time was different. It carried on for a number of months before she gave up. Too much had changed in her life, the future she wanted was unattainable now. She quietly passed away some time in early 2011.

Through counselling I was told to allow myself to grieve her death. To accept she wasn’t here any more. It was and still is so difficult not to slip back into old memories, to expect her to be there, making plans for the future. I still have some things in common with her and that makes it harder to forget her.

How can I forget her when I see her face in the mirror every day?

‘Why do we fall down, Bruce?

“Why do we fall down, Bruce?”

“So we can learn to pick ourselves up again.”

Chronically ill people focus mostly on the life that passes them by while they’re sick. It’s easy to do, you lie, stagnant, in bed for days because you aren’t capable of doing more, and with today’s social networking at your fingertips, you can keep track of all your friends ‘out there’ living a real life. People quickly move on with their lives, school friends go to work, college friends move abroad, and you’re still in the same place.  So what do you gain, if anything, from being ill?

If I deleted my medical history, what other assets would I lose? What have I learned that I can carry with me when I’m well again?

I’ve learned humility. Being ill from an early age teaches you that you’re not perfect, and that nobody else is. There are limits to what I can do, and while I’m not happy with that, I know that pushing them will not help my health improve any quicker. I’m where I hoped to be now career-wise for example when I was growing up, but that ideal has changed for me. I’m trying to be the best version of myself within my new limits. I still have the same amount of ambition as ever but now I’m pushing it towards goals I can achieve even when I’m not feeling so strong.

I’ve learned to accept myself. It took me months of therapy to let go of my past before this round of illness. I continued to judge myself against the same high standards as I had before when I was healthy, and I was unforgivable on myself when I failed to reach them. I had to learn to end my sentences with (the perfectly valid) reason for my ‘failings.’ I had to learn to say ‘I’m not top of my class- because I have a serious illness. I was dealing with issues not everyone has to go through, so I shouldn’t have been judging myself against their standards. It was hard. I felt like once I started making excuses for myself, it would be tricky to stop. I’ve always been competitive and ambitious and it was heart-breaking to watch my class-mates graduate ahead of me in college. Since then I’ve had a lot of time to self reflect and learn who I am really am.

I’ve learned self confidence. I’ve been through a lot, and I’m still here. I’ve been in the depths of despair with depression, undergone countless hospital tests and still managed to graduate college during the worst of it. I know my strength. I certainly don’t feel strong every day, mentally or physically, but I know I can survive. I know my weaknesses too, and have learned to live with them, not against them. This might not sound very inspiring to self confidence but with that knowledge of what I can and can’t do, I know myself better than anyone could. I stand up myself more now. I will question doctors if I don’t agree with what they want to try next. Doctors are not gods, and shouldn’t be viewed as such. They are humans, just like you and I, they just studied something else in college.

I’ve learned empathy. We all have different issues to deal with in life, and just because it’s not obvious to the naked eye, it doesn’t make it any less difficult. In fact, it can make things harder; people will stand up and help someone with crutches but ignore the pale face of the woman with MS or Fibromyalgia standing behind them. I can see the real pain in someone’s eyes when they say they’re fine, because it’s the same look I give everyone else. So many people close to me don’t know about my health issues, so I would never take anyone else’s health for granted either.

I’ve learned who to trust. I’m often told I’m quiet, to me that’s not a bad thing and most of the time lately it’s because of fatigue but I just don’t open up to many people easily. I don’t bother telling people who don’t care enough about the medical side of things; it’s just a waste of effort. Close friends in the past have never bothered finding out more about what I go through, when I would have researched ways of helping them if the situation was reversed. My friends may be few in number but the relationships I do have are very strong.

Most importantly, I learned how to be happy. Weeks spent lying in bed or watching TV means I knew exactly how I would spend my time if I had the energy. What you want to be doing most instead of lying in bed is what really makes you happy. Most people are too busy and don’t have the same time to reflect, they have to get on with their lives. I’ve developed hobbies and social networks I never would have dreamed of if I had a more normal working life. Both Crohn’s and Fibromyalgia are linked to stress so I have more responsibility than most to spend my life being happy and as stress-free as possible. Plus it helps with the depression too!

Lastly, I’ve learned speaking up helps. Speaking up about invisible illnesses helps not just people who have them, but it helps educate people who are unaware of them. There’s still so much stigma about some illnesses especially depression. Hiding the problem does not make it go away. In fact, even just seeing it as a problem is enough to make the person with it feel too ashamed to seek help. I’m gaining confidence speaking about what illnesses I have, for the benefit of others who might not feel able to yet. They’re not something I’m proud of, but I’m living with them, and they’re part of who I am now.

What have you gained from your illness?