How Introverted Caregivers Can Advocate for Themselves During Hospital Stays

Staying in the hospital can mean nonstop interruptions, so it’s important to speak up for yourself (and for those in your care).

Last summer, my athletic, energetic, and seemingly healthy three-year-old was sent to the ER because of a small lump in his chest. That same day, my wife and I were informed that he had a sizable cancerous tumor and had to immediately be admitted to the hospital for further assessment.

After days of exams, scans, and consultations with specialists, a pediatric oncologist shared the prognosis. He needed a year of intense treatment that would require him to spend a majority of the time either in the pediatric ward or at the chemotherapy clinic.

It would also mean that he needed a full-time caregiver to accompany him 24/7. My wife and I decided that I would take a family leave of absence and focus on his treatment.

As both an introvert and a highly sensitive person, the daunting fight with childhood cancer came with another challenge: how to cope with the lack of privacy, constant interactions with healthcare providers, and the overwhelming flood of information that happens in healthcare settings.

In this article, I’ll share five insights on how introverts can effectively deal with the non-stop stimuli that occurs during hospital stays.

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5 Ways Introverted Caregivers Can Advocate For Themselves (and Their Family) During Hospital Stays

1. Ask for fewer interruptions, especially non-essential ones.

When my son was in the ICU recovering from a complicated surgery that caused him to experience significant pain and discomfort, he was startled by a loud Santa Claus trying to give him a gift, a large therapy dog with a spirited trainer, and daily appearances by volunteers who wanted to entertain him.

While these were noble efforts by laudable volunteers, if there was something that my son, wife, and I were craving during those heartbreaking and exhausting days, it was a moment of silence.

Although it’s not realistic to advocate for complete privacy when dealing with complex illnesses, like childhood cancer — especially at the ICU or chemotherapy clinic — it’s essential for introverts to communicate their desire for fewer interruptions to hospital personnel. This is especially necessary regarding those whose work is not indispensable in the patient’s treatment.

For example, when it became evident that we’d have to spend the end-of-year holidays in the hospital, I respectfully asked the staff and volunteers not to enter the room performing loud actions to celebrate the holidays. They were happy to assist us, and this simple request reduced the number of visits to the room. I was relieved to have some quiet time to re-energize and continue caring for my child.

I also communicated our preferences regarding the timing for check-ins to nurses and doctors. They were happy to comply, when possible. For example, nurses were able to give my son night medications before falling asleep, so he could rest for a longer period of time. Residents also delayed their rounds (that, in some cases, were before 6 a.m.) in order to let our son wake up by himself instead of doing so because a team of doctors was examining him.

2. Voice your preferences regarding getting information from the medical team.

No one in our family had ever been diagnosed with cancer. Given the urgency for my son to begin treatment, I had little time (a few days) to learn about the illness, available treatments, side effects, and other key aspects that were critical in making decisions about my son’s future. The speed and amount of information provided by the medical team was overwhelming. There were a dozen specialists coming to the room, and all of them offered details that seemed crucial. In some cases, the information was inconsistent or even contradictory. Thinking about all this material was draining for my introvert brain.

To address this situation, I decided to ask the medical personnel to slow down. I started asking doctors to repeat the information multiple times, until I was able to document it. I asked numerous questions (that I had prepared in advance) to make sure I was not left with any inquiries. With that information, I was able to tell doctors when another specialist had provided different details.

I also asked the residents doing rounds to have their discussions outside the room (no need for a four-year-old to listen to five adults talking about his body in medical terms) and to include me in those discussions. More than once, I interrupted the doctors to share information they didn’t seem to have (like reactions to certain medications) or to relay our preferences based on our knowledge of our son’s health.

Advocating for a slower pace of information, and interrupting conversations of doctors and nurses, could be an uncomfortable situation for introverts, who generally prefer to listen and avoid loud debates. It is also uncomfortable because medical staff don’t have idle time, so their reactions might not always be friendly.

Nevertheless, this action allowed me to feel more in control of the situation, seek second opinions, and, on more than one occasion, find solutions to make my son feel better during the treatment.

3. Welcome help from others, but on your terms, not theirs.

When we shared my son’s diagnosis with others, friends from my son’s school reached out, telling us they were determined to help. Unfortunately, they never asked how they could help.

So they started taking actions and planning activities that were not helpful; they were actually distracting. One time, for instance, my wife and I were rushing to the ER to assess a post-chemo fever. At the same time, we were trying to deal with multiple texts and voicemails from a friend who was at the grocery store, demanding to know which ingredients to buy for a dish she was making us (even though we’d never requested help with food). Similar situations happened with other acquaintances, who offered to conduct activities that sounded lovely, but ones that didn’t make a difference in our circumstances.

Caregiving is a full-time activity, and it’s one that is particularly taxing in hospital settings. Help from relatives, friends, and healthcare professionals is absolutely necessary. But… for introverts who prefer to reduce the number of people in close proximity, it is challenging to have multiple individuals, from relatives to strangers, interacting in a hospital room.

Therefore, introverts need to set boundaries and be vocal about who could be helpful and what type of assistance they should provide. I respectfully asked people who were not helpful to stop trying to please us and told others exactly the type of support we needed from them. These actions allowed me to reduce the number of people showing up in the hospital (or at home). I was then able to optimize their help based on our given needs at the time.

Do you ever struggle to know what to say?

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4. Stop extroverts who want to be your spokesperson.

Extroverts feel comfortable talking to large groups, sharing (or oversharing) personal feelings and thoughts with their network, announcing news, and discussing events. As an introvert, my preference was nearly the opposite: to post a discrete social media message sharing my son’s diagnosis and keep details private for most of the treatment.

I didn’t expect that a close relative was going to become the spokesperson for my son’s illness. As a distinctive extrovert, she started sharing the news with everybody she knew — and even with strangers she encountered. Then, she continued offering updates and sharing details of the treatment.

These people ended up learning aspects of our situation that I considered private; they also reacted to information that was not true. I have no doubt that this extrovert was as heartbroken as I was, and she was doing it with the best intentions. However, it was not her role to announce an intimate journey like ours to the world.

I decided to enact some boundaries (once again). I spoke to our informal spokesperson and kindly, but firmly, asked her to stop. I explained that only my wife and I could share my son’s progress, and it was our prerogative to decide when, and how, to share details. The silver lining of this encounter was that I also asked her to assist us by reaching out to her network with a specific task.

For example, we were looking for a second opinion for a post-surgery complication, and she was able to find an oncologist willing to discuss the issue. Extroverts’ desire for communication, and their extended networks, could be very helpful — with the appropriate guidance from us introverts.

5. Accept that alone time, and self-care, might not be possible at times.

If I had a dollar for every time I heard someone tell me that in an airplane you have to put on your own oxygen mask before assisting others with theirs, I could pay all our medical bills.

Yes, there is plenty of evidence that self-care is important, in particular for caregivers. However, when you are facing a cancer treatment tsunami that demands radical changes in your family’s life, housing, personal finances, and careers — all while caring for a toddler who is facing isolation, plus a painful and intrusive treatment — self-care feels like a luxury.

You see, most hours were already scheduled for his medical care, and unexpected complications filled the rest. Between major projects — like moving to an apartment close to the hospital and ordinary household errands — I felt that I needed 30 hours every day; 24 just didn’t cut it. Even taking 15 minutes to eat, or sleep for one uninterrupted hour, was next to impossible while staying in the ICU or ER.

As an introvert, my most precious self-care activity is seeking some moments for myself and squeezing in some alone time. It took me six months to be able to find time for a quick workout or to read an article. It is hard to understand how I survived those first months, but the key is that I accepted that the activities I used to prioritize for my self-care were no longer possible; the energy needed as a caregiver would then come from other sources, like my son’s resilience.

“One hour at a time” became my dogma. In addition to this acceptance and focus, I decided to communicate clearly to people to stop telling me to prioritize my self-care. Some suggestions — like a spa day, a date with my wife, or scheduling drinks with neighbors — sounded like we were in an alternative universe at the time.

Returning Home from the Hospital With My Son — And Many Lessons

After 10 months, thanks to my son’s remarkable strength to tolerate the treatment and an excellent medical team, we were able to start a new phase of his care that required fewer visits to the hospital. As an introvert, this phase was a breath of fresh air for me in many ways. I rediscovered the pleasure of a few minutes in silence, the joy of playing with my son at home, and other activities that charged my energy. I also found myself being annoyed by small actions of extroverts that, during my time in the hospital, were fairly common.

This experience helped me better understand my personality and make me feel confident about what’s possible for an introvert to do in extreme situations. For introverts that face a stay in a healthcare facility, especially a long one, or who must become caregivers, I can assure you that your skills will help you confront the challenge and will give you the opportunity to shine in this role. You will also have the chance to stretch your comfort zone and face fears that will become life lessons and help you reach future goals.

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