When you are diagnosed with a chronic illness like MS, your neurologist becomes a constant presence in your life. It is essential to find a doctor you can trust and with whom you can effectively communicate.
A Companion for a Long Journey
When I prepare for a long trip, I spend a lot of time thinking about what to bring, how to pack, and above all, who to choose as an companion on my adventure. I think we should look at MS as an ongoing journey, and make the choice of neurologist based on who we want by our side for the long haul. Unfortunately, I did not understand this right away. Like many people, I started this difficult journey of dealing with MS by letting myself get “swept along”, and I did not exercise my rights to carefully choose my neurologist.
My ‘Odyssey’ of Multiple Sclerosis
11 years ago, when I got sick, there was no way I could know how long my journey would be. As with so many newly diagnosed people, when I experienced my first symptom (blurry vision) I was frightened but did not think it was something so serious. Though giant steps have been taken in treating MS, in the time since my diagnosis, when I started this journey everything felt like a trial.
When my blurry vision did not resolve after an hour, I went to the hospital and was admitted as an inpatient. Without knowing what I had, I hoped it would pass. In the next few weeks I undertook every imaginable examination, some of them very painful. But it took a long time to get a proper diagnosis, let alone supportive medical treatment. In the meantime, my vision got worse and I became fatigued as well. I thought the fatigue was simply due to the exhausting nature of the medical treatment, but of course, I was wrong.
I became all too familiar with the phrase, “We have to wait for the results of the tests”. Of course my doctors were right about this, but I found these words so terrifying and my fear continued to amount. Looking back on those days I cannot help but feel like no one tried to comfort me. I was placed on a cortisone IV treatment, and nobody told me about the side effects. I could not sleep for the first week of this treatment, and the memory of staying awake for hours listening to my roommate snore is still like a torture to me! I did not get any support from the doctors or nurses, no sedatives, and no explanation as to why the cortisone was keeping me up. Until one evening, exhausted, I fell asleep in a waiting chair in the hall. A nurse put me to sleep on a litter outside the doctor’s office.
The insomnia resolved, but my “odyssey” of diagnosis continued. I was moved from exam to exam, with no explanation. Things just happened: MRIs, lumbar punctures, evoked potentials. Hours spent in a narrow tube listening to impossibly loud noises, stings in the spine and everywhere else, my face and skull covered in gel and electrodes. On top of this, the blurriness, headaches, vomiting, and nausea. I remember praying for the pain to stop, even if it meant ending everything right there. But I persisted despite of everything.
Learning the Worst, Needing the Best
The moment I received my diagnosis is seared into my memory. The neurologist came into my room, closed the door, and spoke about “suspected demyelinating disease”. There was no explanation given, just a laundry list of next steps. I was shocked, afraid, and uncertain. I had so many questions: “When will my headache go away? Or my nausea? Will my vision ever get better?” And all that my neurologist could say, was, “For now you have to wait and see.” There it was again, those horrible words, “We have to wait and see”!
The first few days after my diagnosis I could hardly get out of bed. I stayed there for days in the dark, talking to no one. When I had a panic attack, screaming and crying in the middle of the night, my family called an ambulance, and I was given an IV tranquillizer. That was the day I decided that I had to look for another doctor. It wasn’t just the uncertainty of the diagnosis which caused my emotional pain, it was my doctor’s lack of willingness or ability to take the time to explain things. I like to think I can deal with hardship in my life, but not without having someone to give me reassurance and guidance. After learning the worst, I knew that I needed the best.
From Curing to Caring
It took a lot of trial and error to find the right doctor. I found the National Multiple Sclerosis Society to be very helpful. I was able to get a list of specialists from their Helpline as well as a publication that taught me what questions to ask to find the right doctor. I’ve been working with one of those specialists for the past ten years. My doctor over time has truly become a companion on this journey. He knows my situation well, gives advice I understand, and is never abrupt or rushed. His attention is all for me, not for my illness. I feel like our relationship has progressed from “curing” to “caring”; I know he sees me as a person and not as a list of MS symptoms.
One thing I have learned from this doctor is the importance of taking the time to think about my situation before my appointments. My doctor has explained me the importance of having an accurate description, not just of my symptoms but the way they progress and manifest differently from day to day. One of the biggest problems of diagnosing the effects of an exacerbation is not knowing exactly how to describe what is happening in my life, but my doctor helps by creating an atmosphere where I do not feel rushed, and I have the time to speak things through. Nonetheless, I prepare in advance for each appointment so that I know what I will discuss.
Tips for Effective Communication
I once read that, out of 100% of what you think of communicating to another person, only 80% is said, 50% is received by the other person, 30% is understood, and only 10% is remembered. If this is true, it’s all the more important to have a clear sense of your message before going to see your doctor. This shows respect for his or her time and also increases the likelihood you will be able to discuss, and get recommendations about, the symptoms or problems which are of greatest interest to you.
Explain your symptoms clearly and precisely. Instead of saying “I have a backache” or “my leg hurts”, I might say, “every time I get up from the chair I have a twinge in my back at this precise point that lasts a few minutes and disappears by itself if I take a big breath” or “if I walk more than 10 minutes I have a pain behind the knee that expands to the heel, a feeling of warmth and stinging pain”. The downside of this approach is it takes more time, but it helps my doctor greatly in trying to narrow down causes for the symptoms.
Always keep your records. I have extensive files at home, where I keep records from previous exams and therapies. I also keep an agenda in which I write relevant episodes, side effects, doubts and questions. This helps me track how things are changing over time.
Don’t be afraid to ask questions. Not only do I ask a lot of questions, but I am not afraid to ask the same thing multiple times if I do not understand the answers. I write the questions in order of importance to ensure I have time to discuss the most important things in the time available. When I know in advance that I will need a lot of time, I tell the doctor’s secretary when I first book the visit.
Give your doctor time to answer. I know that I have a tendency to interrupt people especially when I’m anxious. But I try to keep on top of that impulse and to give my doctor time to state his answer. Over the years my doctor and I have developed a relationship that lets him be frank with me, for instance I admitted to him I started drinking again and he said bluntly this was a very dangerous thing to do in light of my current medication. It was a hard thing to hear, because I enjoyed having a few glasses of wine with dinner, but hearing his full explanation of why this was risky, without interrupting him or insisting I would be alright, convinced me to change my behavior, and now I am less at risk for side effects thanks to his honest advice.
I’m not afraid of disagreeing if it seems to me that the doctor has not well understood my symptoms or he suggests me a therapy that does not seem suitable to my lifestyle: I have the courage to tell him.
I ask someone trustworthy to come with me. I do it because I think that 4 ears can listen better than 2 and because I know that when I’m nervous and under pressure I can only assimilate in a piecemeal way the important information that the doctor tells me about the disease and the therapies. Only if I’m sure I understand correctly can I make decisions responsibly.
I’m involved in the decision-making process. When we talk about MS, therapy needs to be planned in the long run and I want to be involved in the decision-making process firsthand. This is sometimes a big responsibility for me, the doctor suggests the most suitable option but I want to be ready to make informed decisions, show courage and assume my responsibilities.
I share my frustrations I share my frustrations when I am periodically overcome by sadness, anxiety and anger. I talk with him even when I am overcome by exhaustion and frustration, especially at times when my disabilities progress or when therapy does not work as it should.
I follow medical indications… and this is always the hardest part for me.
We can help you to explore your experiences in Multiple Sclerosis so that you can find your own way to understand yourself in light of your RRMS or SPMS and explore its emotional impact on your life.