BETTER UNDERSTANDING HOW TO LIVE WITH LUPUS

How can you prepare for your appointments with your doctor?

Both patients and doctors are often frustrated by the lack of time they have during hospital appointments. Hospitals in a few countries allow for double-length appointments. Also, several months can pass from one appointment to the next. It is therefore very important to prepare for your visit to make the best of the limited time available.

Before the appointment:

  • Prepare a list of questions and sort them in order of importance as there may not be time to answer them all in one appointment.
  • At the time, think and note down anything worth mentioning about lupus or that influenced your health in general since the last visit.
  • If you have been prescribed new medication by your GP or another specialist, note it down.
  • Check if you still have prescriptions for your needed medication. Note down things that could be missing.
  • Also think of a clear statement of how you are doing at the moment, and how your lupus is doing.
  • Dress appropriately and wear something that is easy to remove in case of a medical examination.
  • Don’t forget to take your notepad to your appointment!

At the appointment,

  • Be focused with a minimum of small talk.
  • Be honest about your symptoms, your routines and adherence to medication.
  • Make sure you cover the most important questions you listed first (if you are afraid that you will miss something why not hand your shortlist to the doctor).
  • Don’t hesitate to ask the doctor to explain or re-explain if (s)he says something that you do not understand.
  • If there is any new medication that is prescribed, ask why it is important you should take it, and if there is anything special to know about it like temporary or longer-term side effects.
  • If you regularly have memory problems, don’t hesitate to note down important things, or ask the doctor to note down instructions for you.

Many patients have difficulties with taking their medication as prescribed. It is very important that you talk openly about this with your doctor. Be clear with what drugs you take, and which ones you sometimes or regularly “forget” or “adjust”. This will help your doctor to make appropriate adjustments to your treatment and work with you on how to best control your lupus and its symptoms. If the doctor does not know the reality about your “adherence to treatment”, it might lead to prescribing drugs which have a greater propensity to cause side effects or that need to be given in higher quantities than the medication you are already taking.

At the end of the visit:

  • Repeat aloud instructions you have received, if any.
  • Check your list to ensure there is nothing important that you have forgotten.
  • Ask if your GP will receive a summary of this visit. It is important that your GP is up to date with the evolution of your lupus. If no letter is planned, make sure you note down key messages that you should convey.
  • If your hospital has a “lupus nurse”, don’t hesitate to stop by her and discuss what your key takeaways from your visit have been and to ask any residual questions that you may have.
  • After a few appointments, think about your relationship with your doctor; do you trust him/her to properly take care of your lupus? Is the relationship good? If not, you might need to consider asking to see someone else.
Takeaways
  • Hospital consultations are often much shorter than patients and doctors would wish. Be prepared with information and questions
  • Be clear and honest about your adherence to treatment

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