7/10 Hospital Stays When You Have Sensory Needs, Allergies, or Sensitivities

How do you plan for a hospital stay after surgery when you have sensory and chemical needs? This guide can help you pack for your stay and prepare strategies for communicating your needs to hospital staff. We’ll also discuss planning for stays when you have more severe medical sensitivity needs, such as MCAS and severe allergies.

Guides don’t often talk about how to make your hospital time more comfortable when you’re neurodivergent or have sensory or chemical needs. We’ve noticed that many surgery guides tell you how long your expected hospital stay will be and how many days of bedrest to expect but don’t provide much information about navigating those potentially long days! You’ll likely sleep for much of this time – sleep helps your body heal! But, you may also find yourself awake with little to occupy yourself between vitals and meds or in-bed exercises (or you fall asleep just before the nurses arrive to check your vitals and dispense medications!) Here are some tips!

Things To Think About For Your Hospital Stay:

First Things First:

How long do I expect to stay, and how long should I expect to be on bed rest?

QueerDoc resources include our gender affirming surgery articles.

What Could Help Me During My Stay?

What do I like to do when I’m recuperating in bed?

• Games or puzzles (physical or electronic)
• Read (magazines, books, audiobooks)
• Crafts
• Online stuff
• Music
• Spend time with my support team (visitors)
• Other.

What comforts me when I’m in pain or overwhelmed?

• Is there anything my care team should know about how I metabolize pain meds or my relationship with pain or pain medications?
• Can I bring comfort items from home?
• Do I have sensory needs to take care of?
• How do I self-regulate?

Do my ways of communicating change when I’m stressed or in pain? What tools might help me express my needs?

• Do I need cognitive support when stressed or in pain? What tools might help me?
• What are the visitor policies? When can people visit, how many can visit at once, and how long can they stay?

FOOD: Do I have allergies, sensitivities, or chemical or dietary restrictions that my care team should know about?

• Hot tip: do you have/need safe foods? You can review the patient menu before admission and plan your meal options. In most hospitals, you can order your own food from the hospital kitchen.
  • High-protein foods support healing.
  • You will have been intubated during surgery. Liquid or soft foods may feel better for the first day or so.
  • Consider probiotic/fermented foods such as yogurt to help your body adjust to antibiotics.

• Hot tip: if someone else is ordering food for you, write your preferences on your whiteboard or post a safe foods sheet.
• Hot tip: bring shelf-stable packaged food with you or have your personal support team bring snacks and meals to you when they visit.

Ideas for things to pack for my hospital stay:

• A storage caddy to keep items on organized on your bedside table
  • Check out classroom supply stores for craft caddies
• Comfort items, if allowed (blankets, plushies, favorite pillows, sensory tools, etc.)
• Ear/noise and eye/light protection for better sleep/rest. Hospitals can be loud, bright, and unpredictable.
  • Consider a battery-operated task lamp
  • Consider a white noise machine
• Temperature regulation items. Hospitals are notoriously cold.
• Moisturizers! Lip balm, face, and body moisturizers. You know what works for your body, and it might not be what the hospital provides! Hospital air is often dry.
• Consider a lotion stick to help apply lotions to hard-to-reach areas.
• Wipes! Your care team can help with sponge baths, and hospital-provided wet wipes are probably available, but if you have a preferred brand–or need a specific brand–consider bringing some with you.
  • You will be using a bedpan while on bed rest.
• Your personal electronic devices and chargers (there is always a risk of loss/theft.)
  • A lockbox
  • Consider a power strip and long-cord chargers.
• If you usually use items such as night or day splints, compression gloves, or other support tools, you may wish to have them.
• CPAP? Ask your care team about whether to bring yours with you.

• Communication tools
  • There will likely be a whiteboard in your room. What is your relationship with dry-erase markers? Hot tip: grease pencils can be used on whiteboards!
    • Alternatively, are you an artist? Bring extra in your favorite colors and tips! You won’t be on bed rest for your entire stay!
  • The hospital should have nonverbal communication boards available
  • Writing materials for use in bed: a small notebook, notepad, whiteboard, flashcards, etc., and writing utensils
  • Voice recording tools

• Recreational Tools and supplies – things to read, do, or otherwise occupy yourself.

• Journal/note-taking materials for yourself not intended as communication tools.
  • Consider making a calendar/daily planner for each day of your expected stay:
    • Notes From My Care Team
    • Questions To Ask My Care Team
    • What Should I Expect From My Body Today?
    • What Might Happen To My Body Today?
    • In-Bed Exercises
    • Who might be visiting today, and when?
  • If making signs for your door or room, bring surface tape!

Door and Room Signs for Sensory Needs

Consider making door and in-room signs to reduce the need to repeat important Taking Care Of Me information.

IMPORTANT:

• Signs won’t eliminate the need to express your needs otherwise
  • You or your advocate will likely need to directly tell each person in your care team what your most critical sensory needs are
  • You’ll need to do this with all new members of your team. Nursing shifts generally change twice daily, and you may not have the same nurses on consecutive days.
• Be selective and prioritize what messages are most important.
  • Healthcare people are often very focused on tasks and may not scan the room for written information or have the bandwidth to read them.
  • What are your top safety needs? Consider those for door signs. Smaller signs, such as allergy warnings, can be placed in-room at action stations like on an IV pole, where they can interrupt harmful actions.

Some Door Signs That May Be Helpful:
Note: Keep Door Signs to a Minimum

• Keep Door Closed
• Scent Sensitivity: NO X, Y, or Z
• Keep Lights On/Low/Off
  • Lights may need to be on for procedures for your safety.
• Communication Needs

Consider Creating a “How To Care For Me” Set of In-Room Signs or Folder

• Sensory Needs:
  • How To Interact With Me During Procedures (as applicable)
    • Ensure I have a sensory object like a __.
    • Talk about the procedure so I know what is happening.
    • Talk about something else, so I’m distracted.
    • Give me time to set up listening to music/other.
    • Distract me physically, such as applying elsewhere on the body.
  • “One voice” policy
  • Please keep lights low or off
  • Scent triggers (especially cleaning supplies)
  • Other supports
• My Overwhelm/Dysregulation Signs
  • Tell your care team if you have identifiable signs of impending overwhelm and
  • How to support you when overwhelmed

Hot tip: shift change happens at the same time each day. Could one of your personal support team members be present during shift change to brief new healthcare team members?

Sign up for our mailing list and download our Hospital Stay Planning Guide for Sensory Needs
Hot tip: use the planner pages in your “How To Care For Me” folder!

Small Signs at Point of Use

• Scent Sensitivity: Please Do Not Use (or other appropriate wording)taped to hand sanitizer/soap dispensers.
• Allergies/Severe Sensitivities taped to the computer monitor and IV pole.
• Please Keep the Lights Dimmed at the light switch.

Consider A Contact Sheet For Your Whiteboard

There will likely be a space on your room whiteboard for who your primary contact is and how to reach them. Consider having a contact sheet pre-written that you can tape to your whiteboard, especially if your support team is complex. If your support team documentation includes a spreadsheet, you know who you are (we recognize you, polyam and chosen family folk!)

Severe Allergies, Sensitivities, Dietary Restrictions, Triggers

Planning a hospital stay if you have severe allergies or conditions like MCAS that have chemical triggers can be complex. This article is not intended to be a comprehensive guide for individuals with life-threatening reactions to ingredients/chemicals/foods. For a more detailed discussion on safety planning for these scenarios, please see:

Corn Allergy Girl: Hospital and Medical Safety with a Corn Allergy

Hospital Princess: Hospital Admissions With Mast Cell Disease, Part 1

Hospital Princess: Hospital Admissions with Mast Cell Disease, Part 2

You may be able to bring safe supplies for allergies, sensitivities, dietary restrictions, and triggers. You will need to clear this with your care team.

Consider asking about safe supplies in your first surgical consult.

You may have better access to planning your stay with hospital staff if your surgeon is part of a gender clinic within a hospital system rather than an independent practice.

Your hospital team’s priorities after surgery are:

• Infection control
• Promoting healing
• Managing any complications

They will worry about infection control for anything you bring in, especially items typically sourced in a sterile form or packaging or cleaned by hospital staff. This is a necessary and mandated part of their jobs. (See an infographic designed for healthcare staff about preventing surgical site infections!)

However, you may be able to negotiate bringing:

• Your own full bedding, hospital gowns, grippy socks, and towels.
• Masks and respirators.
• A HEPA filter for your room.
• They are less likely to be concerned about personal care hygiene supplies but may refuse to use medical products and supplies not sourced and stocked by them.
  • You may be able to arrange for the hospital to provide safe(r) alternatives to the products they usually stock.
  • You may need to provide documentation of medical necessity or work with your other care providers to do so.
  • You may need to provide sourcing information for any medical-grade products you supply (and may need to purchase only single-use items.)

If you have medical restrictions on the foods you eat and products that come in contact with food surfaces such that hospital-cooked food is not safe for you, you may be able to negotiate:

• Eating supplies – plate, bowl, utensils, sippy cup, straws, dish soap.
• Safe foods brought to you by your support team.
• Storing and reheating foods at the hospital.

Your regular and emergency meds

• You may need to bring a supply of your regular and emergency meds.
• DO discuss your daily meds needs with the hospital pharmacist before your stay.
• DO discuss your unsafe ingredients list and alternatives with the hospital pharmacist, your surgeon, and patient coordination staff if your hospital has them.

Door Signs for Severe Sensitivities

Keep It Brief and Highly Visual – Post Your Most Important Safety Information

What are the top two items that everyone in your care team needs to know before entering your room?

Consider a blunt message that covers multiple medical issues:

• Airborne and contact anaphylaxis triggers
• MCAS deregulation triggers
• Scent triggers

You can go into more detail inside your room.

Consider sign groupings for important, related information.

• “Do Not Use” signs for hospital-supplied soap and sanitizers.
• Consider blocking access to the dispenser with the sign.
• “ALLERGY: ingredient” signs for IV pole and computer monitor
• Avoid blocking access to medical instruments
• Consider specific “Do Not Use” signs for items that would be outside of staff’s usual work flow, such as pre-filled saline flushes.

Sign up for our mailing list and download Planning For A Hospital Stay With Chemical Sensitivities

Got other ideas or tips? Let us know at info@queerdoc.com!

References

Sadatsafavi, H., Vanable, L., DeGuzman, P. et al. Sensory-Friendly Emergency Department Visit for Patients with Autism Spectrum Disorder—A Scoping Review. Rev J Autism Dev Disord (2022). https://doi.org/10.1007/s40489-022-00318-6

Maria Strömberg, Lina Liman, Peter Bang, and Kajsa Igelström.
Experiences of Sensory Overload and Communication Barriers by Autistic Adults in Health Care Settings.
Autism in Adulthood.Mar 2022.66-75. http://doi.org/10.1089/aut.2020.0074