Chronic Illness

Dear Patients…

I’m back! After taking a break from writing last week to save up my spoons for a beautiful wedding last Friday, I am recovering and back to blogging away. Now, onto the topic of the people that we spoonies see more than our own families, doctors. Doctors are simultaneously completely wonderful and completely terrible at the same time, however, as full-time professional patients, we can make the relationship between us and our doctors as good as humanly possible. I have used my own and other full-time professional patients’ learnings from extensive visits to doctors, to compile a collection of tips to have the best relationship possible with your doctors. 

  • Never go in unprepared. It’s always best to have a plan for what you want out of your appointment, notes on new symptoms or flaring problems, how recent medication changes have affected you or any other problems you wish to discuss. Don’t try to cram too much in though! No amount of preparation will help if you try to throw too much information at your doctor in one go. 
  • Be patient. Your doctors have many other patients and your health is highly complex. Give them time to find out how suitable a medication or treatment may be, don’t ever expect a call that day when they say they’ll call you back that day, you will only exhaust yourself. Whilst I find it infuriating how long I have to wait for anything to happen, impatience won’t hurry your doctors along, it will only tire you out and anger will only cause tension between you and your doctor. 
  • There’s nothing stopping you from not doing something your doctor has told you to do. Obviously there’s an exception to this if not doing it will put your life at risk, but the rest of the time it’s perfectly acceptable to refuse a medication or treatment if you don’t think it’s best for you. 
  • Doctors aren’t big on hearing “I read online…”. Although you undoubtedly know a lot more about your conditions than most doctors, they don’t like being made aware of this or the fact that you trust “online” more than them a lot of the time. Just make your point or ask your question and maybe leave out where you got the information from… 
  • Jump those freaking hoops! It’s irritating, time-wasting and totally sucks but it’s necessary. Whatever needs to happen to get you the help you need, do that thing. It is always worth it. 

I have spent a lot of time in the last few months alone speaking with my doctors, never mind the last five years and have found that these few things make getting along and advocating for my own health/being a full-time professional patient a LOT easier! Do you have any tips for being the ultimate full-time professional patient? What makes your patient – doctor relationship run smoothly? 

(As I very quick side note, I couldn’t resist popping in a wedding snap and wishing my beautiful friends Anth and Kayleigh a wonderful married life together. Congratulations again!!) 

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Amie xxx 

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