I've just written this and wonder how many of you agree?
Dear hospital staff from the cleaners to consultants; on behalf of the complicated rare and regular patients:
You're looking at our lengthy and complicated notes, or cleaning up our blood stained bed wondering what you got yourself into? Yeah, we know. It’s OK. We know we aren’t the type of patient most medical staff like to take on. We can’t be easily fixed and we know that can be disheartening and frustrating for you. We get disheartened and frustrated, too.
Chances are we’ve seen a lot of people in your position in many hospitals and chances are they haven’t all been positive encounters. We’ve been doubted and we’ve been blamed. We’ve been misunderstood, ignored and forgotten about. It’s hard not to be a little jaded after all that. We don’t want to be crushed by high hopes as they crash down, so we’re probably going to be a little wary of you, but we promise we will try to put that aside so we can start
It’s probable that right now we know more about our illnesses than you do, and if you don't know us well this is almost a guarantee. Please be OK with that. Consult the Internet or talk to other people to learn more if you wish, but when it comes to understanding how our illnesses affect our lives, talk to us. And even if you’re already familiar with our conditions, don’t forget that our bodies never read the textbook chapter on “how to have so and so condition” so they probably don't follow all the rules.
Please please above all be honest with us if you don’t have an answer or if you need to do more research. Whether you're the nurse trying to find the best way to help us shower pain free, the hostess trying to find the best food not to harm our tummy or the Doctor looking for that magical drug to relieve a specific symptom please remember We’re educated about our conditions and we’ve developed good rubbish radar, so if you make something up or give us a round-about answer, we will know and therefore chances are we won’t trust you anymore. Admitting when you don’t know something gives everything else you say more credibility.
Keep in mind that the short time and place in which you see us is just a snapshot of our lives. Believe it or not, we’ve spent time worrying about how we look before seeing you. We’ve worried that if we look too put together you might not believe we’re actually sick and you won’t take us seriously. We’ve also worried that if we look too disheveled you might think we’re depressed or don’t care about getting better and that, again, you won’t take us seriously. Just as a frown does not imply that we’re defeated and have given up, a smile does not indicate the absence of worry or pain. Please don’t make assumptions about how we’re doing based on whatever snapshot you happen to capture that day.
You might be scared of us because we have a chronic illness, but you should know we’re scared of you for the same reason — because we have a chronic illness. We’re scared you won’t trust our instincts and will accuse us of overreacting when we express concern. We’re scared you will become frustrated when we don’t get better and blame us and that you will look at failed treatments as our own personal failures. We’re scared that one misunderstanding will ruin our hopes of our quality of life ever getting better.
You see, we can be as well-informed, empowered and proactive as we want, but we have no power. We can’t prescribe meds, order tests or make referrals we can't set menus, put up our own IVs or make sure the floor is clean. We need you for that. We need you to believe us, and we’re scared that you won’t.
Living day in and day out with these illnesses gives us an awareness of them and a perspective you cannot fully understand. Please try to remember that. And we will try to remember that you can see things we can’t because you don’t live it day to day. We will try to remember that your education and experience helping and treating other patients gives you a perspective we can’t fully understand.
We know you make mistakes and that’s OK. So long as we can sometimes make mistakes and that be ok too. Sometimes we’ll catch each other's oversight, but that doesn’t mean you aren’t doing your best or We're not trying hard to get better it just means we’re human. We also know you won’t always be able to help us. Sometimes at the end of an encounter with us you will feel helpless. That’s OK, we will too. There will be more opportunities we’ll try again.
Just remember sometimes we get defeated. Because we know things could be worse, we sometimes forget we’re allowed to wish things were better. And sometimes we stop fighting for them to be better. We lose hope. We need you to help us through those times. Encourage us. Remind us what determination and perseverance look like. Most importantly, please know we will always appreciate each and every one of you giving your time to care for us.
Thank you for filling out the endless paperwork. Thank you for going out of your comfort zone to try and help us. Thank you for giving us a chance at a healthier future. Thank you for the little things the cup of tea at 2am, the extra biscuit on the tea round the touch of the arm as you clean our tables or just holding our hands when we don't even really know why we're upset. We know it’s your job, but we’re so grateful all the same you make us feel safe and that in itself is an amazing gift.
Each and every one of you is worth your weight in gold and from the people who see you the most we applaude you, we love you, you are our second family you are our friends.
Thank you X