Whether you’ve been diagnosed with a condition and attending regular appointments, or going through a string of appointments to get some answers, I hope you find this blog article helpful.
Types of doctor’s appointments
During my previous experiences, I’ve come across all different types of doctors, and I don’t just mean different like a neurologist to a GP (I did that too). But I mean different doctor’s appointments with varying personality and style.
I really admire some amazing doctors that I have come across, who are compassionate, dedicated and just make you feel safe. I’ve also come across some who I didn’t feel comfortable with.
When it comes to your appointments, you need to feel comfortable with your doctor. You don’t want to develop “doctor appointment anxiety” and not god. Doctors are people too and have different attitudes on how they deal with patients. Some are wonderful, and make sure that you feel cared for which is important with autoimmune conditions.
The ‘not so wonderful’ doctors
I have experienced not so wonderful doctors (in my own personal opinion) when I really felt attacked and almost as if I was a burden to the doctor and his long day. This isn’t a good situation. While I don’t blame him for being the way he is (we’re all just people and take along with us our own set of beliefs, attitudes, daily thoughts etc), I definitely did not want to continue going to someone who obviously wasn’t in the mood for understanding and would probably add unnecessary stress.
Some people get into the medical world and maybe their hearts were never originally in it, or maybe things have happened to them when they had bad experiences themselves with patients. But whatever the reason, when it comes to conditions like ours, you need someone who will not only give you the facts but support you in your overall life quality.
They can help you with exercise regimes, eating properly, monitoring your medicine and blood tests etc. I believe it’s a two way street, just like any relationship there needs to be respect from both parties. We need to respect our doctors as they have a lot of knowledge and can help us with things we don’t understand.
Doctors also need to respect their patients, as patients come to them not just with these medical problems but with heavy hearts. They are worried and don’t really want to create more problems. While it can be frustrating, and not all the time will answers be straight forward or maybe even be doable at the time, both parties need to understand that is an ongoing process.
Autoimmune conditions are complicated, even a little bit of explanation of how things are going can be helpful, letting the patient know what is really happening but in a gentle way. Patients, similarly, also need to keep doctors up to date.
Doctor Appointments Tips and Ideas
The following are some tips and ideas I’ve learned along the way through my journey to getting the best out of an appointment at the doctors:
Have a positive attitude but be honest too
I know everyone’s personalities are different. You might not have the same problem I had before. I used to be ashamed of what was happening to me and didn’t want to be too honest with what was going on with me. While I still don’t talk much about what is going on in person, I have learned that having a condition like ours is definitely NOT something to be ashamed of. It’s not your fault what is happening. But what you can do is remain positive.
I don’t like to dwell on my problems, because I believe that if you focus so much on the bad things or the pain, then you’ll just feel it even more. Whether you want to share about your condition to someone personally is your prerogative. But when it comes to being honest with your doctor. You definitely MUST tell them what is going on. The doctor would ask me “so how are you?” and I’d reply “I’m great”, but it wasn’t true. You don’t need to pretend to be okay.
A lot of the times with autoimmune conditions you might “look” healthy but there’s a lot of things going inside that just don’t show on the outside. You need to be honest with the symptoms you are experiencing, don’t expect a doctor to be able to help you if they aren’t able to see a clear picture of what is happening. It can save you a lot of pain and suffering.
Keep your “support” team close to you
One big lesson I have gained from all of my experiences is that we need to keep our family and friends close. If you feel nervous or scared, you don’t need to go to an appointment alone. You can bring along someone close to you, even if they aren’t able to say much or do anything specific, just having them there can make you feel more comfortable. After your appointment, they might be able to help you with remembering what you need to do, or assist you with tasks that you find hard to do on your own e.g opening a can of beans.
Keep a diary
Some appointments might only be a few times a year, with months being in between each, I find it’s a great idea to keep a diary so that you can explain what happened, when it happened and have proof as well. I once got a bit of a wakeup call when I was in the ER, and I told the nurse I had fevers. She asked me, “how often? what temperature?” I didn’t keep a diary then, and wasn’t able to answer her.
She told me that by just saying you have fevers isn’t so helpful because they might not even be fevers. While her manner of speaking was a little brusque, I really appreciated her honesty because after all the years of just going through the motions, I realised it would be better to actually record my symptoms, making it easier for the doctor and I to track my progress.
Even years later I can look back at my diary and recall periods where I hardly had any complaints, to other periods where the pain was unbearable. I can then see what things I may have done differently those months, or whether it was just sort of random. You can also use this diary while you are at the appointment itself, jotting down little notes of advice or reminders. You’ll find it very useful and I even found that since my memory sometimes gets a little hazy (sometimes from medicine or from random neurological symptoms I get) I feel at peace know it’s been written down somewhere before I forget.
Have a list of questions ready
As I discussed before, some appointments might not happen for months, so it’s always good to come prepared and make the most out of your 15-30minute appointments. Have a list of questions ready that you would like to address with your doctor. It makes better use of both your time since you get to the point, and also when you leave you feel like you have gotten something out of the appointment.
Earlier on there were many times I left appointments feeling a little bit wanting. While I know doctors can’t solve everything in one go, but even little questions like the following can make you feel you benefited from having the appointment: Is there any advice you can give me for improving my sleep? Or maybe, is it okay to use topical cream to help the pain in my knees? I always come prepared with my list of questions, and I’ve had very positive feedback from my doctors too for bringing one.
If ever you feel like something needs clarifying or you don’t quite understand, don’t be afraid to ask even if isn’t on your list of questions. It’s good to ask questions so that you don’t have any fears to worry about later on too and gain a better understanding of what you think you need to know.
Bring along any scans or results
Some doctors will remind you this in a pre-appointment letter, while others don’t. But it’s always good to bring any results that may help in explaining your current condition to the doctor. They can decipher the results and then explain to you what they mean.
Make a Medical History Summary
After so many years, you’re going to have a lot of information about what you have experienced. I made a medical history summary a couple of years ago, and found it really helps to keep new doctors up to date, and remind old ones of what’s happened. The idea is to have a copy for yourself to update, and to give one to your doctor as needed. You can set out your summary any way you like. I actually keep two. One is about 4-5 pages, and that might sound like a lot, but I divided my major milestones by age, for example:
|Age 13-15||• migraines|
|GP, Neurologist, Otologist etc.|
You can also set out important experiences by date instead of years. As my experience become more current my medical history changes. In the latter part of my history I write like this:
|12/30/10 – 5/1/11|
|Check up with Ophthalmologist, in connection with vertigo and nausea. Medicine changed, prednisone now higher at 30mg per day|
After going each age milestones, I then enumerate the symptoms I have experienced, and an explanation of them in my own words, so that the doctor can also let me know if they are really what I am experiencing or something else. This is when keeping a diary is also quite useful, you can take excerpts out of that to describe your symptoms, for example:
|Arthritis||– warm areas, migratory, non-asymmetrical, in major joints, stiff, swollen, painful to touch, limited mobility etc.|
|April 16, 2006:||Can’t move right hand fingers, painful, put on warm compress, took Celebrex, pain eased after a few hours|
You can then go onto listing down the medicine you are taking, what time you take it, the dosage you take and how long you have been taking it. You might remember all these, but it’s good to have this written down so your doctor knows too and can look back onto your own written files to compare with his own notes.
I mentioned earlier I keep two summaries. Now the second one, is a concise version, I limit it to one page only. This is most useful for emergencies, or first time appointments when you just want to give a brief overview of your medical experience. I did this by just giving the dates I was diagnosed with anything major, or admitted to hospital. Then go onto listing current medicine, and symptoms (without explanation). The longer version of my summary is useful for doctors later on when they want to know more. My doctor told me he was really glad I had given him what I was going through in my own words because it helped him understand how I saw it and where I was coming from.
Get a Referral
There have been many times when a doctor I saw wasn’t really the person I should be seeing. If you know, and feel the doctor knows too that you need to be seeing another specialist then get a referral. Don’t be afraid to ask one. The doctor will be happy too because they’ll be worried if they can’t provide the proper care to you or your condition is out of their knowledge scope.
I wish you all the best at your next appointment. Feel free to message me anytime with your comments, or other ideas on how to get the best out of your next appointment. Just remember to keep smiling, take care of yourself, and keep your loved ones close