Your new life started when you heard those four, dreaded words: “You have multiple sclerosis.”
Being newly diagnosed is a roller coaster ride—and finding sense in your diagnosis is no easy feat. Proper communication is hard in the best of times, and focusing on information while receiving your diagnosis is a challenge. Everything you hear that day is important, and as those words sink in, you’ll try to discuss your concerns about the future, possible treatments and what you can do to make this emotional transition as easy as possible.
From now on, you’ll be seeing your neurologist on a regular basis—so if your neurologist is uncommunicative or doesn’t make you feel at ease enough for you to ask a lot of questions, choose a different doctor. You are free to do so at any time. Because of the nature of MS, you deserve someone who will sit down with you and actively listen to what you have to say.
A proper relationship with your neurologist is based on trust and respect. On your end, absolute honestly with your doctor will be key. And establishing a positive rapport with your doctor makes discussing the nitty-gritty details of life with MS a breeze.
You may also find that when you have a positive relationship with your doctor, you will be more satisfied with your care, which can lead to better outcomes. If you want to make the relationship with your neurologist work, here are a few steps you can take:
• Try to become more attuned to your body, pain or disabilities. By getting in touch with your body, you’ll be able to tell your physician exactly what you’re feeling.
• Prepare a list of questions you need to discuss, and write down a summary of your treatment plans.
• Share anything and everything that might be useful for your doctor to know.
• Ask for more details if your doctor explains something you have a hard time understanding.
• If you’re unhappy with your care or feel uncertain about the doctor’s recommendations, go for a second opinion elsewhere.
• Be aware that, just like you have certain rights and responsibilities in the doctor/patient relationship, so does your doctor.
Before my diagnosis, the rebel inside me decided that I would be strong, continue to work hard, go on holidays, go out with friends, and do many other things—as if everything was fine. I was young and I didn’t want to let anything bring me down, despite feeling as weak as a wet towel.
However, on the day of diagnosis, my neurologist said, “From now, you will need to change your lifestyle and work.” I was flabbergasted because her words went completely against what I had promised myself.
Did I listen to her? I’ll let you guess the answer.
She adamantly informed me of things I would need to do and things I had to stop doing—and I was committed to proving her wrong. Her stubbornness came from years of working in the MS field, mine from an unrealistic way of looking at my new future with MS.
It took some time to accept that her team of excellent neurologists do a tremendous job at being knowledgeable in their field. In time, I also realised she was correct in her recommendations. Even when you know what it feels like to have MS, your neurologist knows the technicalities. So find someone you trust, someone who cares about your health, and someone who stays up-to-date on the latest news in the MS field.
I’m now very happy with my neurologist. She’s a force to be reckoned with in Ireland and is involved in clinical trials as well as in patient advocacy. And while she is very busy, when I go in prepared, I know that I will get the answers I need.
In the end, the relationship with your neurologist will be one of the most important relationships you will have in your medical life. Choose wisely.