q-100Hello, I have a chronic kidney diease and health issues.

i have had to go into hospital many times for many years and i feel like im a burden on them because im not a fix it? every time i have to go in i have jnr dr,nurses,n/a and doctors speak badly to me, lieing to me, talking about me loundly has if im not there,which other patients can also hear.

there has been many horrible situations ive had to go through and many tears shed! i feel like im being punished for being ill,in the past i have complained tried to speak up, stand up for myself, i really dont know what to do anymore i feel very low, i dont know who to go to for halp, i feel so alone!

there is no cure for my disease,and will have to go in hospital for the rest of my life and i dont want to be treated this way any more! could you please advise me of what i can do for i dont know how much more of this i can take?i would be very gratefull for any advice.thankyou.




I can certainly understand the pain you are describing: needing the help professionals are there to offer while being treated as though they resent your presence. It is very confusing, no doubt!

Things you can do, (even if you’ve already tried some of them):

  • Be assertive.  This means reminding people that, although you can understand that they only see you occasionally, you live with your condition daily. Therefore, YOU are the expert on how you feel and what kind of help you need. They are in charge of knowing the full range of options and providing you with the best care to make the choices that serve you well.
  • Be compassionate.  That might sound strange. Be compassionate in the way you talk about your current condition at any time, for example: “I know you have many, many patients and you cannot possibly remember all the details and progress of each case. Please ask me for updates and include me in medical conversations that concern me. I”ll rely on you for your best medical opinions and care.”
  • Be willing to repeat yourself like a broken record.  You will have to re-teach people how to treat you.  It might sound like this:  “I want to take an active part in my health so I need to be kept in the loop on all things. I want to be and feel respected as the patient in the same way I respect your medical expertise. Can we agree to mutual respect in this process as we know it is ongoing? That would really help me feel safe and cared for.” And, as I mentioned, you may have to say this to many people many times before it sinks in.
  • Become the expert on your condition as well as you yourself while living with the condition. That will help you take a vocal and collaborative approach. Even though many medical people prefer uninformed patients, this is YOUR life and you want to participate in every aspect of it fully.
  • Be forthright and timely.  When something happens that you don’t like, speak up in respectful ways to all concerned. “This doesn’t work for me, but _____ would be more helpful.”  “I am feeling alone and left out in a place where I want to feel safe and understood. What would help me feel better (more included, more acknowledged) is _______.”  It is important for everyone to tell people what works rather than point out only what doesn’t work.  Offer solutions, as in those examples.

I hope that helps. Do write again and let me know your progress.

I wish you well.

Dr Shaler

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