4 Self-Advocating Tips
When suffering from such a mysterious illness, you are often required to see multiple doctors that specialize in different things. I can definitely get a little messy at times. This is where self-advocating comes in, It can be overwhelming at first when you are trying to keep track of everything but here are some things that might help.
1. Research test results and treatment options
Doctors, I do believe, have the best intentions. But sometimes, them explaining results can seem so complex and hard to understand entirely. I have found taking time to review my results and doing research on accredited sites like hospitals and research facilities where they publish medical journals prior to going to my doctor appointment I have a better understanding of what questions I have and possible treatment going forward.
2. Ask for copies of medical records
Don’t be afraid to ask for copies of test results and medical records to forward to all your providers. Not all facilities use the same record-keeping software, so getting a test ordered by one doctor doesn’t always mean the next doctor you visit will see it or even know your medical history in its entirety. Keeping records for yourself is also very important, you never know when you are going to start seeing a new provider or when offices may change software, this way nothing can fall through the cracks.
3. Make follow-up calls
Don’t be afraid to make follow up calls and appointments when needed. We often feel like we are burdening others with our needs and that is not the case. If you are suffering or hurting in any way then you have to be adamant about getting care. No one understands what you are going through more than you and therefore the severity of your symptoms can often be masked by your demeanor and others may not see that.
4. Get to know your pharmacist
Keep a consistent pharmacist to fill all your medications. One thing I have found to be extremely beneficial is having a pharmacist I trust. There have been multiple occurrences where a doctor has prescribed me a new medication that contains something I have a history of being allergic to or that if mixed with another prescription I am currently on it could cause a severe reaction and the pharmacist is the one who caught it.
Self-advocating is so important! Do not discredit yourself and your knowledge of your body and your illness. Your voice is the most important one in the room when it comes to your care. Do not be afraid to use it!
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?