Letter to my Hepatitis C Nurse

I wrote this open letter, following a series of very difficult visits with my Hepatitis C nurse; during which sessions, I felt misinformed and spoken to in a very unhelpful way. Not good for keeping treatment on track (in terms of good health information0 or for general morale. The idea and format for this letter was inspired by a letter originally written by Bek Oberin. If you want to read that original letter - please visit support forum Hep C Nomads. (HepCNomads.co.uk) search Letter to People Without Hep C - by Bek Oberin. This version: letter to my Hep C nurse, is intended either as an encouragement, in itself, to patients, especially those who have had difficult sessions with medics; or as a letter to be printed and handed to health care professionals, as needed. good health to you all. xxx eva
BEFORE I CAME TO SEE YOU FOR MY FIRST APPOINTMENT, I HAD ALREADY BEEN ILL FOR A LONG TIME..... I WAS TIRED, AND ACHING, AND NAUSEAUS – AND WITH NUMEROUS UNEXPLAINED SYMPTOMS. I DIDN’T KNOW I HAD HEPATITIS C. I DIDN’T EVEN KNOW WHAT IT WAS. BUT IT HAD CHANGED MY WORLD – ERODED MY QUALITY OF LIFE IN SO MANY WAYS. AND I NEED YOU TO UNDERSTAND THAT THROUGH ALL THAT TIME, WHEN I HAD BEEN STRUGGLING SO MUCH WITH MY HEALTH, I HAD ALREADY SEEN MANY DIFFERENT DOCTORS AND HEALTH PRACTITIONERS. MANY OF WHOM HAD SENT ME AWAY, TELLING ME IN EFFECT THERE WAS NOTHING WRONG WITH ME ... OR IT WOULD PASS... OR PERHAPS, THAT I WAS NEUROTIC.
SO I HAVEN’T ARRIVED TODAY WITH A BLANK CANVAS. I AM ALREADY FEELING ANXIOUS, AND YES, A LITTLE LACKING IN CONFIDENCE OF MY OVERALL HEALTH CARE.
PLEASE UNDERSTAND, THOUGH, THAT I CARE ABOUT MY LIFE AND MY HEALTH. I WANT TO GET WELL: FOR ME, FOR MY FAMILY AND FRIENDS, MY WORK, AND ALL THE THINGS THAT MAKE FOR A FULL AND ACTIVE LIFE. SO WHEN I ASK YOU QUESTIONS, IT IS BECAUSE I WANT TO LEARN AND TO KNOW HOW TO MANAGE MY TREATMENT – WITH YOUR HELP – SO THAT I CAN MAXIMISE MY CHANCE OF CLEARING THIS HORRIBLE VIRUS.

PLEASE REALISE THAT I DON’T HAVE A NOTEBOOK IN ORDER TO READ FROM A CHECK-LIST INTENDED TO CHALLENGE YOU AND YOUR EXPERIENCE. MY CHECKLIST IS TO HELP ME GATHER MY THOUGHTS – AND TO ENABLE BOTH OF US TO WORK WELL TOGETHER AND BE SURE WE HAVE CLARIFIED ESSENTIALS. I AM JUST FINDING OUT ABOUT HEPATITIS C.AND I NEED YOU TO KNOW THERE'S BEEN A PERIOD OF A LOT OF ADJUSTMENTS AND A HUGE LEARNING CURVE. THROUGHOUT MY TREATMENT, BECAUSE I AM SICK, AND MY CONCENTRATION IS AFFECTED, I ASK YOU TO BEAR WITH ME, IF I SOMETIMES NEED TO REINFORCE THE FACTS OR ASK FOR FURTHER EXPLANATIONS.
I REALISE FROM YOUR RESPONSES THAT SOMETIMES, YOU MIGHT THINK THAT I AM TRYING TO PIECE TOGETHER TOO MUCH SPECIALISED KNOWLEDGE. SOMETIMES, WITH VARIOUS MEDICS, IT SEEMS AS IF IT’S REGARDED AS INAPPROPRIATE,EVEN ODD BEHAVIOUR, WHEN I WANT TO ASK ABOUT AND PROPERLY UNDERSTAND MY OWN BODY, MY BLOOD, MY TREATMENT. I ASK THAT EVEN IF I SOMETIMES MISUNDERSTAND CERTAIN THINGS – YOU WILL PLEASE BE PATIENT, AND LISTEN AS I PIECE THINGS TOGETHER. IN WHAT I SAY, THERE MAY BE NEW LEARNING AND MATERIAL WHICH IS USEFUL TO YOUR PRACTICE, BOTH IN WORKING WITH ME AND FOR YOUR OTHER PATIENTS TOO.
I WOULD LIKE YOU TO KNOW THAT WHEN I RESEARCH MATERIAL, THROUGH SUPPORT GROUPS, AND ORGANISATIONS OR THE WEB AND INTERNET FORUMS, I AM NOT OBSSESSIVE OR UNSTABLE. I AM LINKING UP WITH OTHER PATIENTS WHO INCREASINGLY UNDERSTAND WHAT A POSITIVE AND REAL DIFFERENCE IT CAN MAKE TO SHARE EXPERIENCE AND INFORMATION. WE ARE BEING PROACTIVE AND HELPING OURSELVES AND EACH OTHER – AND HOPING TO ENCOURAGE GREATER UNDERSTANDING OF THIS DISEASE. BOTH FOR OURSELVES AND ONE ANOTHER, THE GENERAL PUBLIC AND THE HEALTH SERVICE. PLEASE DON’T ASSUME THAT I AM SO NAIVE AND UNAWARE THAT I AM GOING TO SOAK UP ANYTHING I AM FED, VIA THESE OTHER SOURCES, WITHOUT DISCUSSION OR DISCRIMINATION. I AM SENSIBLE ENOUGH TO COME AND ASK QUESTIONS AND CROSS-REFERENCE. AND YET I STILL DO APPRECIATE IT IF YOU GIVE ME FURTHER GUIDELINES OR EXPLANATIONS.
AND WHEN YOU DON’T KNOW THE ANSWER, I APPRECIATE IT WHEN YOU TELL ME SO, AND OFFER TO CHECK IT OUT FOR ME – OR POINT ME IN THE RIGHT DIRECTION. IF YOU LISTEN AND BE PATIENT WHEN I STUMBLE – BECAUSE, AGAIN, REMEMBER, HEPATITIS C AND TREATMENT ERRATICALLY AFFECTS MY CONCENTRATION – SOMETIMES, I MAY HAVE DISCOVERED KEY FACTS ABOUT NEW RESEARCH, OR TREATMENT MANAGEMENT, WHICH COULD BE HELPFUL TO YOU AND YOUR CLINIC.

OF COURSE I RECOGNISE HOW MUCH YOU KNOW ABOUT HEPATIS C AND I REALISE YOU HAVE EXPERIENCE, AND GUIDELINES TO FOLLOW. I HOPE YOU CAN RESPECT ME, TOO, AND REMEMBER THAT I AM NOT THE SAME AS EVERY OTHER HCV PATIENT WHO YOU SEE. I NEED YOU TO KNOW A LITTLE BIT ABOUT MY PERSONAL CIRCUMSTANCES, MY REAL LIFE AND DAY-TO-DAY SITUATION AND HOW IT IS AFFECTED. ALSO HOW MY CIRCUMSTANCES MAY AFFECT MY TREATMENT. IT MAKES A DIFFERENCE WHEN YOU USE MY NAME, AND REMEMBER SOME SMALL, PERSONAL DETAILS ABOUT MY LIFE, WHICH I HAVE TOLD YOU.
PLEASE ASK ME HOW I AM AND WHO CARES FOR ME. I NEED YOU TO KNOW WHAT IS MY SUPPORT NETWORK – OR LACK OF ONE. AND TO HAVE SOME PICTURE OR HOW MUCH I AM STRUGGLING TO CONTINUE WORK, OR COPE WITH THE DISAPPOINTMENT OF STOPPPING WORK. DO YOU KNOW IF I AM BECOMING ISOLATED? IF MY FAMILY ARE STRUGGLING TO COPE WITH THE TREATMENT AND IT’S EFFECT ON ME? PERHAPS I HAVE NOT KNOWN HOW TO EXPLAIN THE LEVEL OF DEPRESSION OR MOOD SWINGS THAT ARE AFFECTING ME – OR JUST HOW HARD IT IS TO FEEL AFRAID TO TELL CERTAIN PEOPLE IN MY LIFE ABOUT THIS DISEASE
AND ESPECIALLY, WHILE I GO THROUGH TREATMENT, I NEED YOU TO BE SOMEONE I CAN TALK TO AND CAN TRUST. SOMEONE WHO UNDERSTANDS THAT I DO THIS DAY BY DAY AND WEEK BY WEEK AND SOME DAYS ARE TOUGHER THAN OTHERS. THAT SOMETIMES I FEEL AFRAID, ANGRY, DISCOURAGED OR FRUSTRATED - AND JUST VERY, VERY TIRED.

I NEED TO FEEL COMFORTABLE WHEN I COME AND SEE YOU – NOT WARY AND WORRIED. COMFORTABLE THAT YOU ARE AN ALLY AND WILL HELP MAKE THE JOURNEY AS SMOOTH AS POSSIBLE FOR ME. PLEASE RECOGNISE THAT I AM FINDING THE SIGNPOSTS AND THE TRAVELLING COMPANIONS ALONG THE WAY – AS WELL AS DOING THE LONELY STRETCHES WITH AS MUCH COURAGE AND DETERMINATION AS I CAN. WHEN YOU HELP MAKE THE ROAD AHEAD MORE CLEAR – WE CAN BOTH KNOW THAT IT IS ME THAT HAS TO TAKE EACH STEP. THANKYOU.
(written by eva day.)