Surgery Prep & Recovery Advice from Disabled Women
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by Arielle Dance, Diversability Writer
Each surgical adventure comes with more wisdom and more should-have, could-have, would-haves. When preparing for surgery, organization is key – a packing list, medication list, securing a support system, and much more. During recovery, I repeat my favorite quote as an affirmation to where I am in my journey — “Be gentle with yourself, you’re doing the best you can.” Even with this wisdom, I learn most from connecting with people who are in a similar situation as me.
As a disabled person, surgery can be a part of your regular routine or a surprise inconvenience. Members of the Disability Leadership Collective shared their words of wisdom related to surgery prep and recovery. They also shared their must-haves during this time. .
Arwyn Swanger (she/her), who lives with multiple disabilities including endometriosis and PCOS advises that folks “don't let the fear of the unknown keep you from advocating for yourself”. She is currently planning for another excision of endometriosis surgery and hysterectomy. During this process, she has chosen to build a strong support system with her doctors and other disabled people. She works closely with her care team to determine her plan. She believes that preparation for the unknown helps her eliminate stress during a traumatic time.
Jessica Lane (she/her) has severe endometriosis and adenomyosis. When she has excision surgery, she relies heavily on her support system and other people with her illness. By connecting with other people with endometriosis and adenomyosis, Jessica believes it can inspire and motivate someone who is having surgery – knowing that there is life, health, and thriving possibilities post-op. She shared that “having hope and support is everything”. Jessica reminds us that we do not have to go through the journey alone but can lean on people in our support team. “Be open to being helped to truly allow your body to rest and recover after.”
Lacey Heward (she/her), who was diagnosed with SCI T9 incomplete, has had numerous surgeries on her back, Abdomen, hip, bladder, kidney, and parathyroid. Her advice to other disabled people having surgery is to “put aside your pride, and ask for support. Healing is a team sport!” Lacey acknowledges that healing requires rest and that is nearly impossible without asking for help with household chores, meal preparation, and errands. She reminds us to continue to seek connections even if only for someone to come and hang out. “Let someone else take care of you for once… And when we're in pain, feeling nauseous and sick, we don't do the best job taking care of ourselves.” Because independence is valued, it may be challenging to reach out to people without feeling like we are imposing on their lives. But still, Lacey reminds us, “take a break, let go, and let someone in.”
Nichole Beiner Powell-Newman (she/her) has multiple chronic illnesses and disabilities including Ehlers-Danlos Syndrome, Functional Neurological Disorder, Mast Cell, Small Fiber Neuropathy, POTS, Endometriosis, and Myalgic encephalomyelitis/chronic fatigue syndrome. From her gallbladder and endometriosis surgeries, she learned valuable life lessons. She strongly encourages others to ask medical providers all the questions they have. Nichole also recommends connecting with other people who have had similar experiences to calm nerves. “Nerves right before you go in for surgery are already high, so making sure you're prepared makes everything less stressful.”
Tessa Gordon (she/her) has glossopharyngeal neuralgia, a rare disease that causes severe facial pain in the back of the throat. The pain makes it impossible to talk or swallow, and is made worse by cold air, movement of the tongue, spicy food, or sometimes unknown. For this pain, Tessa has had several nerve compression surgeries. Her advice to someone in a similar situation is to ask all the questions without fear of the responses. “You may not feel comfortable ever, but you are allowed to ask questions and share concerns, and clarify to get more comfortable.” Be sure to find a surgeon who specializes in your condition. For those who are unable to speak, Tessa recommends finding a way to share your concerns and perhaps have an advocate with you. For someone, like her, who is unable to eat, be sure to ask for the hospital’s nutritionist to meet about supplements and malnutrition. Tessa reminds us that for many people, “surgery is a treatment, it isn't a cure. Go in with realistic expectations. Remember, this is a big surgery, so allow your body time to recover.” She also acknowledges the challenges of invisible illnesses – sometimes you may seem recovered, from the outside, but the body is still healing and needs time and care.