Appointment Guide for Newly Diagnosed Patients
A few weeks ago I was in the airport on my way to Texas for psoriasis advocacy. An older gentleman who worked at the airport stopped me, complimented me, and we began to discuss my reasons for traveling. I informed him I was doing some psoriasis advocacy and gave more details to my trip. He then started asking me more questions about psoriasis and advised that one of his dermatologists suggested he may have it. The gentleman shared his frustrations of being told different things by doctors with no real results. I asked him had he had a biopsy yet. He stated that he wanted one, but a doctor had never suggested it, and he was scared to ask his doctor for a biopsy because he didn't want to make it seem as though he was telling the doctor what to do.
How many of us have felt this way when interacting with our doctors? How many of us have believed that the doctor is the expert, therefore our concerns are not of great significance? Have you ever left out of a doctor's office feeling unfilled and hopeless? I know I have. I've met a lot of people with chronic illnesses who feel as though their job is to visit the doctor and for he/she to tell them what they should do, I honestly think this is the wrong attitude. Our interaction with our doctors should be a give and take relationship, not a dictatorship. As a patient, you have the right to be heard. The biggest patient advocate in your corner should be YOU.
Be honest about your feelings
At my doctor appointments, the doctor usually walks in the room and says, "Hello. How are you?" In the past, my response was, "I'm fine." But at times this was not always the truth. Sometimes I would walk into the doctor's office honestly frustrated with my disease, failed treatments, and quality of life, but the answer I gave was always the generic one. Are you guilty of this too?
In dealing with psoriasis for 20+ years, I've found doctors work hard on finding a treatment that works for someone with psoriasis, but often times the emotional and mental impact of the disease are neglected. When you are a patient advocate for yourself, you must be honest about your feelings. If you are having a crappy day, be honest with your doctor and do not give the generic answer of, "I'm doing ok," if you are not, in fact doing okay. Your doctor can't provide help if he/she doesn't know something is wrong. Your medical staff job is to take care of the entire you, not just parts of you, and this includes the mental aspect. Your doctor may not be able to assist you directly with issues outside of the skin, but they can certainly refer you to the necessary people.
Create a list to take on your next appointment
Create a list of questions to take to your next doctor appointment. Do you have concerns about medicines, quality of life, pregnancy, or complications? Write your concerns down or place them in your phone and share it with your doctor. Before your appointment call your doctor's office and ask if there is an email address you can send the questions for the doctor to look over before you arrive. Here are some sample questions:
What type of psoriasis do I have?
Besides treatment, what are some do's and don'ts for caring for my skin on a daily basis?
Did you know when it comes to psoriasis you should only take lukewarm showers, there are certain lotions you should avoid, and over-the-counter options to help with the itch? Ask your doctor about the different ways to handle your disease on a day-to-day basis.
What clinical trials are currently available for those with psoriasis?
This may be a question to ask if your insurance won't cover certain medicines. A clinical trial may allow you to receive free treatments.
How long do I have to discontinue a treatment before starting a new medicine?
It is important to talk to your doctor about when you decide to STOP taking a medication, not just about starting a new one, or you are taking more than one medication at a time. You may have a rebound effect or flare-up of symptoms if you stop too soon.
If you are pregnant or thinking about pregnancy...
Which treatments are safe to use while pregnant? How long do I need to be off of a medicine before getting pregnant?
I've had a doctor refuse to give me a medicine because I am of childbearing age, and the medicine could have serious side effects on the reproductive health of a woman. This was a fact I did not know, but I am grateful that he cared enough about me to bring it to my attention. He also gave me treatment options I could use while pregnant.
How long should it take for me to see results with the medicine I'm being prescribed?
Are there other diseases I am at risk for?
Are there any local support groups for people with psoriasis?
Research the options
The doctor's office shouldn't be the first time you hear of different treatment options. Be your own patient advocate and search different treatment. Create a list of treatments you want to try with concerns and questions you have about these options. Some treatments require more from you than others. You have treatments which require you to use twice a day, while other treatments only need to be used once every 3 months.
What has your experience with doctors been like? Share your thoughts? Tell us about a time where you had a great experience. What did that doctor's office do to satisfy your medical needs?
Make sure to keep a journal of how your disease changes over time. Does it worsen due to the weather, the food you eat, or stress? Are you achieving the results in the amount of time you expected? Share these findings with your doctor on your next appointment.
If you aren't seeing the results you expect within 6 months, voice this concern to your doctor. If nothing changes, it's time to search for a new doctor.
How often do you experience brain fog?