My friend Kristy (name changed) has seen over 64 docs in her quest to find out what she has. She was recently diagnosed with Scleredema and now sees even more docs. See Kristy's thoughts about chronically ill doctor visits.
When you are sick, you go to the doctor for help. When you are really sick, you may have to go to 10 doctors before one can even help you a little bit.
Preparation for visit
- Know why you are at the doctor.
- Rehearse your reason(s) until it is fairly concise.
Advice for your visit
- What kind of patient you are may determine the quality of your medical care.
- Treat them as gently as you would like to be treated as they can feel abused by their patients.
- Do not whine or burden the doc with all your pain.
- Instead, rate it on a scale, then move on to what they actually can help with.
- Help them help you.
About doctors
- Understand that most become doctors to fix people.
- If you are chronically ill, they cannot fix you.
- If you have a seriously incurable illness, they may not even want you as a patient They can’t help you and it depresses them.
- Have compassion for their viewpoint and their choice of a profession.
- Docs want to heal.
- They may want to feel like a hero.
- They do not want to be the one to tell you that you might just die from your disease, and it is too ugly for them to stick it out with you.
- It takes a really gutsy doctor to walk the road with you when they know what will most likely happen and they are helpless to help.
- They feel like participants of a bad, bad dream.
- They can’t get out of this nightmare and they have to watch you be tortured while you are begging them for help.
- Docs hate having to do that.
Kristy’s note:
I read that most rheumatologists do not like patients with Fibromyalgia. The patient hurts everywhere and by the end of the visit, he actually hurts too. They are drained and not very excited to see you again.
One day my attitude was soooo bad that all I could do was cry; they did their best to understand me. They offered me pain meds. That was a shocking day. I responded very, very graciously even though I did not generally like this doctor.
Doctors are very specialized today.
There are so many advances in medicine that no one can keep up with it all.
- Primary care doc
- Handles what they can.
- Determines what they can’t do.
- Sends you to a specialist who went to more years of schooling.
- Specialist
- Doc that went to school just like your primary care but then decided to be taught a specialty by other doctors who become their mentors.
- Mentors
- Older docs.
- Docs that went into research.
- Docs that went on to more school to get their PhD.
- PhD docs
- When you get to these guys, your case is especially complicated.
- Be prepared to have a talk with them.
Visiting the PhD doc
- You need to know all about YOU.
- Be specific and clear even when they mix it all up in a blender and ask you to answer a question that they just picked out of the air.
- Be clear and very specific.
- These docs may have their own agenda and may not even realize that you are a patient.
- They spend most of their time on special projects or teaching other docs.
- They are the medical professors and they are really smart - most of them anyway.
- If they don’t like you, they may simply walk out on you.
- Have a sense of humor and a bit of knowledge of your condition as well as some curiosity or at least pretend that you want to learn from them.
- Be willing to be their subject.
- With this attitude, they become interested in you, and they start telling you all kinds of stuff you could not find on your own.
- These guys will give you clues to your disease if you really listen.
- They also might scratch their head and simply say, they have no idea.
- Now YOU might be in dire straits.
- Muster every scrap of courage you have.
- Start to challenge the docs if you want answers.
Kristy sums up
You are your own best advocate for your medical care.
