Disabled Women Share Their Surgery Must-Haves: From Preparation to Recovery
Woman writing in a notebook on her lap, coffee mug on the bench beside her. Courtesy, Canva
By Arielle Dance, Diversability Writer
I am preparing for my sixth surgery for endometriosis. During the process I found an abundance of pre-operative and post-operative check lists and tips. A simple search poured in results for general surgery prep to procedure-specific lists. Some medical centers also have detailed lists of their recommendations for patients. Some of my favorites:
Woman’s Hospital- What to Pack for Surgery
Very Well Health - What to Pack for the Hospital
Northwestern Medical - 6 Things You Must Pack for a Hospital Stay
With each of my surgical adventures, I make a checklist that covers personal and professional to-dos. I know my personal must-have items include a cozy blanket, warm grippy socks, stiff pillows to prop me up, and a basket with my essentials (i.e. phone charger, medication, water bottle, etc.) at my bedside. Professionally, I make sure I’ve notified the right people, filled out paperwork for short term disability and FMLA, and confirmed a plan for my work to be covered in my absence.
As a disabled person, surgery can be a part of your regular routine or a surprise inconvenience. Members of the Disability Leadership Collective share their must-haves as they prepare and recover for surgery. Here’s what Jessica Lane, Arwyn Swanger, Lacey Heward,Tessa Gordon, Tracy Coval, and Caroline Mailloux recommend.
Comfort items
The most common must-haves were items that bring people comfort. Jessica shared that taking warm baths allows her to show her body care and appreciation. Tracy exercises self care by getting her hair cut/colored, nails done, and a pre-op massage. Here are additional items that echoed from each person.
Weighted blanket
Ear Plugs
Cozy Rober
Cozy blankets
Heat and Ice packs
Body Pillow
Backrest or Triangle Pillow
Comfort Food
Loose fitting clothes
Insulated water bottle with straw
Warm socks and slippers
Eye mask
Claw grabber tool
Body wipes
Warm bath
Other forms of self care
Prepare your body and mind for surgery
When I was preparing for surgery, I was determined to meditate regularly, stretch daily, and even scheduled an aromatherapy massage. These moments of self-care helped me feel more prepared. I wanted to keep my blood pressure down by meditating and strengthening my body for any post-op needs. This was especially helpful when I was having trouble taking deep breaths in the peak flow meter. Similarly, Jessica also utilized “breathwork and meditations for healing every day”. She journaled her thoughts and fears and compiled coping strategies with her therapist. Like Jessica, I worked closely with my therapist to emotionally and psychologically prepare myself for a life altering operation.
Get your paperwork in order
For those who work in a traditional setting, taking medical leave may be a necessary protocol. Whether it’s simply notifying your co-workers or filling out disability paperwork, there is still a need for communication and organization. Tessa shared that “Pre-surgery I had to take a medical leave, and… I spent time filling out a lot of paperwork for short term disability coverage.”
Outside of work, additional paperwork may include a list of medications, passwords, and important contact information to pass along to anyone who may be supporting during this journey. Another key document that some find comforting is a living will or medical proxy document.
Check on your mobility devices
If you use a mobility device, this is an important time to make sure it is in good condition. Lacey shared, “I make sure my wheelchair is in working condition. A slide board is a must for transfers if I'm in pain.” After brain surgery, Tessa uses “A wedge pillow to sleep on post surgery, because sleeping at an incline helps reduce pressure on the brain, and reduce post-op complications.” During recovery, many people may use a cane or walker for stability. Work with your therapist or other provider to confirm that these devices are adjusted to your correct height and have the correct structure for your recovery.
Establish your support system
Think about who will be with you at every step of your recovery. Know that it is important to surround yourself with people who have your best interest in mind and who you trust. Surgery is an extremely vulnerable time and having the right folks in your environment is essential. As adults our independence is very important, but we encourage people to think of when they will need someone else — getting to and from appointments, drive home after surgery, meal preparation, assisting in bathing/wound care/bathrooming, paying bills, grocery shopping, etc. It is vital that you provide your care team with the necessary information to support your recovery. Tessa suggested sharing a document that includes timing of bills, medication list, important contact information, and your medical preferences. In some cases this may include a living will or medical proxy.
Your support system may also consist of people who are not in your direct environment. Jessica found comfort in connection with other people who had the same surgery and who could offer advice and encouragement. Nichole also shared the importance of online communities during her recovery. “Having tips and support from others who have experienced the same surgeries made my subsequent recoveries so much less frustrating and less scary.” For Tessa, having pictures of loved ones (including furry friends) brought comfort to her recovery space. Pulling in sentimental comfort items can have a positive impact on recovery.
Fill your prescriptions
Although the use of medication is especially personal and individualized, we recommend filling any pre-established prescriptions before the day of surgery. This way, when you return home, you will be fully stocked and there won’t be an urgent need to fill anything. The day of surgery, Arwyn always has a medication list that includes dosages and purpose. Ahead of surgery, Lacey also asks her provider to prescribe anti-nausea medication to prevent upset from pain medications. Post-operatively, medical providers may prescribe medications to support healing and recovery. Use discernment when deciding which medications you want to fill and how you want to use them during recovery. For Lacey, she relies more heavily on acetaminophen rather than opioids in order to avoid stomach irritation.
Follow Instructions & Give Yourself Grace
Following care instructions is one of the keys to a safe surgical experience. Be sure to attend all pre-op, post-op, and therapy appointments. In preparation for surgery, many care teams will share instructions including what to leave at home and what to bring with you. For postoperative care, be sure to follow the instructions provided at discharge. In some cases, there will be instructions for wound care. Lacey is sure to purchase the special soap the doctor recommends before her operation.There will also be information about medications, movement, and risk prevention. Caroline reminded us to “plan for recovery time to take longer than you think it will , give yourself grace because you will absolutely be frustrated”.