Develop Your Attitude
Plan for Waiting
These tips have come from our forums as people discussed their upcoming appointments with their specialists. It's a hot topic because the appointment is a big deal especially if it's the first one or it's been a long time coming or new, worrisome symptoms have arisen since the last appointment but do remember that these tips are just suggestions and you're free to disregard them.
If you have a chronic illness you'll be a chronic attendee of appointments. It goes with the territory, whether rheumatologist, pulmonologist or cardiologist, you'll have more than your fare share of "ologists" to deal with and you want to make sure you get the most out of each appointment, especially if you're just starting out. Here are some tips to help you along the way.
This is your appointment, for your benefit, so don't be bamboozled by the healthcare professional. You are allowed to ask questions, challenge what is said, and make suggestions. If you can partner with your healthcare professional all the better! If not, be your own advocate.
Be aware that a diagnosis of scleroderma is a very long term project. It is an average of 6 years for women, 3 for men. See Difficult Diagnosis for tips on coping successfully during such a long process.
Think about the upcoming appointment. What do you hope to achieve from it? What questions do you have and what issues do you want to discuss? Write your goals down and remember to take it with you to the appointment.
This step is critically important when dealing with out-of-town specialists. Blissfully assuming that our doctors have all the time in the world to answer all our questions has probably led to the demise of many doctor/patient relationships.
Find out how long each of your doctor appointments will last. Many doctors have only ten or fifteen minutes per appointment. Usually they are required to see 20 to 50 or more patients a day, but some specialists alot an hour or more per visit, particularly for first visits when they need to take an entire medical history.
Sometimes first appointments are very long but follow-up appointments may be very brief. Never assume that because the doctor takes two hours for your first visit, that you will have two hours on a follow-up appointment, or you will probably be in for a very rude surprise when you are ushered out the door within minutes of your arrival.
If you have a very complicated medical situation, you may want to ask to have extra time scheduled for your appointment. If your appointment time is simply not long enough, you may want to break down your concerns into separate appointments so that they can be adequately addressed.
Obviously, the faster you can get your doctor up to speed on your medical history the first visit, the quicker you can have your goals for the appointment met.
Studies show that most doctors interrupt their patient after only 23 seconds. No big surprise, since they are under such enormous time pressure! So, can you summarize your entire history and current health situation in 23 seconds? You better be able to, because that may be all the time you get!
For example, you might say, "Here is my written medical history overview, the details are attached. And here is the list of questions, ordered by priority, that I would like to have addressed. Basically, I have several autoimmune diseases already, and now my doctor wonders if I might have scleroderma, too, because I have puffy fingers, difficulty swallowing, Raynaud's, and heartburn."
How did you do? Your time is up already!
Consider taking someone with you who can not only share the journey and the inevitable wait with you, but who can also come into the appointment itself.
They can make notes of the relevant points as many of us find our mind goes blank once the exam is over. They may also speak up for you, if you don't feel able. Just be sure to introduce them to your doctor and explain their relation to you at the beginning of the appointment.
(PDF) Hospital Checklist: A Guide for Nursing Patients with Systemic Sclerosis (Systemic Scleroderma) Whilst in hospital many patients will have different needs according to exactly how they are affected. Raynauds and Scleroderma Association.
Bring reading material or entertainment as you know you're going to have to wait -- sometimes even for hours if emergencies topple your clinic's plans. If you have a great book or magazine to read, you will welcome this free time, instead of building anxiety or resentment.
We've seen or done it all in waiting rooms: knitting, mending, snacks, board games, needlepoint, grocery lists, wood carving, drawing, bill paying, and letter writing.
Have your paperwork ready! Never assume that all recent test results will be available at the appointment.
If you have copies of test results or lab work, take them with you. Also bring a list of all your medications, including dosage.
Some of us collate complete files that include all results and consultants' letters, and we bring the file to every appointment.
If you have complex medical issues and many specialists, this habit could be worth its weight in gold. Then if the clinic has no trace of something, you can always provide a copy. Some appointments can be a long time coming, and this will make sure that your precious appointment is not a waste of time!
Take your calendar with you so you can make a follow up appointment that you can actually attend. Especially if it's a busy clinic and vacancies are at a premium, you don't want to book an appointment, only to find that's the day you have the grandkids or have to deliver your big project at work.
Plan a post appointment treat. It can be whatever you like! Ideas include a restaurant, manicure, shopping, massage, picnic, garden walk, museum visit, theatre, or even an overnight stay.
Especially if you have to travel a long way to the appointment, you may as well get the most out of your journey once you get there.
Even if it's just a good cup of coffee, taking time to de-stress after the appointment is always a good idea.
Remember to make use of your primary care physician/GP for any new or worsening symptoms that develop in between your specialist appointments.
Don't save up every symptom or complaint for when you see your scleroderma specialist! Not everything that ails us may be caused by scleroderma, so we don't want to take up appointment time having our specialist look at our allergy that our primary care doctor could have dealt with. That can be very harmful to our health, frustrating to our medical team, and wasteful of our specialist's time.
Of course, our specialist may want to know about the other issues, and as you have copies of all the paperwork from the primary care physician/GP letters to hand them, this won't be a problem. Right?
1. Find out how long the appointment will be. Make a concise list of goals. Be able to state your medical history and case in 23 seconds or less.
2. Bring a companion, your priority list, your medical records, waiting room materials, and calendar.
3. Always plan a pleasant reward after every medical appointment.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: