Living with a chronic illness can be messy, unpredictable, and physically and emotionally challenging. Add in a long hospital stay for a flare, complication, or surgery and you may be at your wit’s end.
As a Crohn’s disease warrior and 4th year medical student, I’ve been both the patient and the medical professional.
Here are some tips for coping I’ve picked up along the way:
Spending time with loved ones breaks up the day, brings so much laughter, and distracts from the pain and stress of a hospital stay.
Our loved ones often feel helpless when we’re sick and ask what they can do to help. Be honest and let them paint your nails or bring you a home cooked meal or adult coloring book.
When in-person visitors are off-limits, our loved ones are only a video chat away. We may not be able to hug them, but we can still laugh over the phone, play virtual games, and show our love.
On a special diet or hate hospital food? Most hospital floors allow patients to keep labeled food in the nutrition room.
Unless you are NPO (meaning you cannot take anything by mouth) or on a special hospital-prescribed diet, then usually you may bring your own food.
I personally follow a blend between the specific carbohydrate diet and the paleo diet to help treat my Crohn’s disease and prefer not to eat the hospital food. I ask my family to stock the fridge with butternut squash soup, plain chicken, turkey patties, and any other flare favorites I’m feeling.
As a medical student, I always ask my patients if they would benefit from any of the healing arts available, such as healing touch, reiki, music therapy, art therapy, and pet therapy.
Therapy dogs are the most popular and bring so much joy. If you’re interested in healing arts, talk to your medical team.
Nothing makes me feel more like a sick patient than wearing a hospital gown. Wear your own comfy pajamas, sweats, and underwear if you can.
Button down pajama shirts and loose T-shirts allow easy IV and port access. Alternatively, you can wear the hospital gown on top and your own pants or hospital scrubs on the bottom.
Pack your own slippers, too. Keep them next to your bed so you can quickly slip them on and keep your socks clean and off the dirty hospital floor.
You can also bring your own blankets, sheets, and pillows. A warm fuzzy blanket and my own pillow always comforts me and may brighten a boring white hospital room.
I know when I’m sick or traveling and don’t have my favorite face wash or moisturizer, my skin feels grimy.
The hospital provides all the basics, but bringing your own will make you feel more like yourself.
I recommend bringing a bag with these items:
- face wash
- dry shampoo
All hospital floors should have showers. If you feel up for it, ask to shower. The hot water and steamy air should make you feel healthier and more human. And don’t forget your shower shoes!
During rounds, make sure your doctors and nurses explain medical jargon in approachable terms.
If you have a question, speak up (or you may not be able to ask until rounds the following day).
Be sure to utilize the medical student if there’s one on the team. The student is often a great resource who has the time to sit down and explain your condition, any procedures, and your treatment plan.
If you’re unhappy with your care, speak up. Even if something as simple as an IV site bothers you, say something.
I remember having an IV placed on the side of my wrist that was painful every time I moved. This was the second vein we tried, and I didn’t want to inconvenience the nurse by having her stick me a third time. The IV bothered me for so long that I finally asked the nurse to move it to another site.
When something bothers you and affects your quality of life, speak up. I should have sooner.
Boredom and exhaustion are two common complaints in the hospital. With frequent vitals, early morning blood draws, and noisy neighbors, you may not get much rest.
Bring your laptop, phone, and chargers so you can better pass the time. You might be surprised by the activities you can do from your hospital room:
- Binge-watch the newest Netflix hits.
- Rewatch your favorite movies.
- Download a meditation app.
- Journal about your experience.
- Read a book.
- Learn to knit.
- Borrow video games and movies from the hospital, if available.
- Decorate your room with your art, get well cards, and photographs.
- Chat with your roommate.
If you’re able, get some movement in every day. Take laps around the floor; ask your nurse if there’s a patient garden or any other nice areas to visit; or catch some rays outside if it’s warm.
Our families and close friends try to understand what we’re going through, but they can’t truly get it without lived experience.
Seeking out others living with your condition can help remind you that you aren’t on this journey alone.
I’ve found that online communities that foster authenticity and positivity resonate with me most. I personally use Instagram, the Crohn’s & Colitis Foundation, and the IBD Healthline app to talk to others going through many of the same hardships.
Emotions run strong in the hospital. It’s OK to feel sad, cry, and be upset. Often, a good cry is all it takes to get back on track emotionally.
However, if you’re really struggling, you shouldn’t have to suffer alone.
Depression and anxiety are common in people living with chronic conditions, and sometimes medication can help.
Daily talk therapy is often available in the hospital. Don’t feel ashamed about psychiatry participating in your care. They are one more resource to help you leave the hospital on a wonderful healing journey.
If you’re living with a condition that forces you to spend more than your fair share of time in the hospital, know that you aren’t alone. While it may feel never ending, doing what you can to feel comfortable and care for your mental health can make it feel a little more tolerable.
Jamie Horrigan is a fourth-year medical student just weeks away from starting her internal medicine residency. She’s a passionate Crohn’s disease advocate and truly believes in the power of nutrition and lifestyle. When she isn’t taking care of patients at the hospital, you can find her in the kitchen. For some awesome, gluten-free, paleo, AIP, and SCD recipes, lifestyle tips, and to keep up with her journey, be sure to follow along on her blog, Instagram, Pinterest, Facebook, and Twitter.