Baby, you're worth it! Assembling an all star care team...
Let me start by saying that being a doctor has to be one of the toughest jobs out there. I mean, the human body is so complex and we are all uniquely and wonderfully made! Some of us more complex than others. For one person to know everything about every part, cell, gene, bone, system, organ, etc..., well is just impossible! I've never been to med school and cant imagine the intense training involved and pressure to always get it right, holding someones life in your hands at times. I have much respect for doctors and nurses, thank you for what you do everyday to help strangers and their families deal with anything from a cold to cancer and everything in between!
That being said, it doesn't mean that every doctor will be a right fit for you, this is true for everyone, especially in the rare disease community.
Finding a primary care physician is usually pretty easy, look to family and friends for recommendations and be sure to have a list of any questions you may have to take along to your initial visit. Think of your initial visit as an interview; Do you feel comfortable with this doctor? Does he/she seem genuinely interested in your health? Are they spending the adequate amount of time to get to know you and answer your questions? If yes, then great, give them a try and see how their follow up care is on future visits. Remember, like in any other business such as a hairstylist or real estate agent, your doctor works for you and if you don't feel comfortable with them for whatever reason, there are other doctors out there.
Finding a specialist is a little more involved, your primary care provider is a good source for a referral to start with but do your own homework as well. I would start by doing your own research, the internet is a great tool for this. Look online in different forums, Facebook support groups, disease/condition specific websites. I would HIGHLY discourage you from just picking someone on your insurance plan without researching them first. This is your health, you deserve the best care available!
When you are rare, so are the doctors available that are knowledgeable in their field. When I was diagnosed with narcolepsy it was through a Pulmonologist who did my sleep study to rule out sleep apnea. He was able to diagnose the narcolepsy and had some knowledge of what it was, but his specialty was lungs, not sleep/neorology. I soon learned after a couple of months that I NEEDED a sleep specialist that was board certified and knew my condition inside out. I went online and asked for referrals in my area on support group sites. I found an AMAZING neurologist (Narcolepsy is actually a neurological condition), that specialized in sleep medicine an hour away from me. Yes, you may have to travel outside your immediate area, but you deserve the BEST care available! You are worth it!
After I received the diagnosis of Narcolepsy my other doctors and specialists were not very familiar with what it really was, since it is a rare disease. Some of my doctors even made puns based on what they THOUGHT narcolepsy was, based on mainstream media and inaccurate portrayals of the disease in movies. I cannot tell you how frustrating that is, especially coming from healthcare industry professionals. Doctors, If you are going to take on a patient that has a rare disease (outside of your specialty), we don't expect you to know everything about every condition, but please take the time to educate yourself on the basics and ask us questions. My condition will affect my treatment. If your doctor is not listening to you or not considering your health as a whole, its time to find a new doctor...NEXT! I went through several doctors after my rare diagnosis, including my primary care physician who I had been with for 15 years. If you're not willing to invest in me, I'm not willing to invest in you...NEXT! Do not be afraid to get second opinions, other options may be available for you, you should know all of them.
If you suspect that your health may be changing or has changed, but your doctor in not listening to you like mine didn't, I have a few suggestions for you.
1- Get copies of all of your medical records, including test results from bloodwork, xrays, mri's, etc.
2- Start a journal of your symptoms; what are they, when did they start, when do they occur, how long they last, intensity and so on.
3- Before each appointment write down your concerns and questions, make 2 copies...one for your provider and one for your records. This way you don't forget to ask and the provider has documentation of your concerns.
4- Document all appointments; date, provider, your copy of concerns and questions from above, and the results of the appointment (answers, treatment plan discussed, treatment/tests ordered, etc.).
5- Keep all of this documentation in a binder with dividers, everything in one place, easy to access. Take this binder with you on appointments that way you have all of your information readily available for all of your providers and especially for new providers.
6- Keep track of your medication; who prescribed it, dates, side effects, etc.
7- I ended up making a one page spreadsheet that was color coded and easy to read at a glance with all of my pertinant information on it; name, DOB, contact info, emergency contact info, blood type, list of providers and their phone numbers, list of my diagnosis' (diagnosis/date of diagnosis/who diagnosed it), Medications (name of medication, who prescribed it, dates, include supplements), known allergies, past surgeries/procedures and dates of, Family history. I keep this spreadsheet updated and provide it to all of my healthcare team. I also keep a copy in my purse to refer to and for emergencies.
8- Take someone with you to your appointments, someone you trust, someone that can advocate on your behalf if needed.
9- Don't give up!
You only get one life, live it the best you can and surround yourself with knowledgeable and empathetic doctors that will also help you live the best life possible! Cuz Baby, you're worth it!
area, checkout Facebook support groups and disease/condition specific websites.