One thing the pandemic did for the disability community was to open dialogue and raise awareness for those living with chronic illness or pain. Long COVID symptoms brought conversations to the forefront regarding those who live with debilitating but often invisible illnesses.
People living with chronic illness are twice as likely to develop mental illness such as depression or anxiety. Many also are more isolated due to being at higher risk for contracting illness when out in public. Having to balance fatigue and depleted energy while managing work and life tasks also doesn’t leave much room for socialization.
Amber Wylde
Many things can be helpful to those living with chronic illness, especially if they don’t have a strong support system. Here are five simple ways you can help ease their burden:
Read a memoir or informational book on the topic of your loved one’s illness. Trying to constantly explain your illness, especially with depleted energy, is exhausting. Just as being a good ally to the queer community or to other marginalized people means educating yourself on their experience so they don’t have to, the same goes for those who are disabled or living with chronic illness.
Simply reading a memoir about someone living with their condition or reading an informational book on the topic can teach you so much. It also will mean much to the person you’re reading for and make them feel seen, valued and cared about. This is something you can do while walking the dog, commuting to work or washing the dishes. It’s a simple way to learn and educate yourself so you can better understand what your loved one is experiencing.
“If you don’t know a good book or where to start, just ask.”
If you don’t know a good book or where to start, just ask. Your loved one is likely far ahead of you in the research of their own condition, and there’s a good chance they’ve found a book or two that really resonated with them and accurately described their experience. Let them point you in the right direction, but don’t make them do the work for you.
Ask curious questions to learn about life in their shoes. Once you have read a book or two to give you a basic understanding of their illness, ask curious questions about what you read. For example:
- What does it feel like in your body when you say you’re feeling ___?
- I read that people with your condition often experience ____. Is that something you’ve dealt with?
- What are some of the most challenging parts of living with your chronic illness?
People with chronic illness often feel forgotten or overlooked. Being intentional about acknowledging their experience and asking curious questions about what they’re feeling or going through will help them feel seen and know you’re a safe person to confide in.
Offer to attend doctor’s appointments with them. Ask them when their next doctor’s appointment is and if they’d like you to accompany them. Especially for people with complex autoimmune disorders, doctor’s appointments are often filled with lots of information and lingo that can quickly feel overwhelming. Offer to take notes and be willing to ask clarifying questions at the appointment to make sure both you and your loved one understand what is being discussed.
Doctors who see these patients every day should, but don’t always, have the patience and bedside manner that keep the person’s lived experience in mind. Being proactive in asking and advocating for their care can make a critical difference in how they feel from day to day.
Don’t assume. Just because they “look like they feel OK” doesn’t mean they actually do. Chronic illness warriors are famous for “not looking sick” even when they feel completely awful.
Just because they look “good” on a certain day doesn’t mean they actually feel good. It also doesn’t mean that because they’re having a good day, they don’t still need X, Y and Z. It could be that staying on top of X Y and Z is what gives them an occasional good day.
Don’t assume how they are feeling or what they need. Ask. What they may need one day may be different than what they need the next day. Think ahead of things you know help their body function better (temperature, seating, amount of rest, limited exposure, amount of stimulation or time out in public) and actively help make those things easier for them.
“Constantly advocating for yourself in a world that isn’t designed to fit your needs is exhausting.”
Constantly advocating for yourself in a world that isn’t designed to fit your needs is exhausting. If you can help do the advocating for them, it eases the mental and physical burden they carry (as well as the anxiety they may feel around constantly having to ask for what they need or be the person who is “extra”).
Help carry the weight of simple tasks. With chronic illness and pain, even the simplest of tasks can feel daunting and overwhelming. Opening a package, taking out the trash, taking a shower and letting the dogs out all take a toll when you live with severely limited energy.
Step up. Take it upon yourself to do some of those simple tasks for them when you’re around. Offer to bring them a meal once a month or send a Venmo to help cover the extra expenses they incur because of their medical condition (think housekeepers, massage therapists, lawn maintenance).
These expenses aren’t luxury items, they’re necessities to keep their body functioning from day to day. But they are expenses that add up quick, especially if they are already struggling to make ends meet due to their limited capacity to work.
If you can do something to ease the burden, do it, no matter how big or small. Allowing them a moment to come up for air is one of the greatest gifts you can give.
Amber Wylde is a national speaker, community healer and the author of three books. Her newest book, Out of Focus: My Story of Sexuality, Shame and Toxic Evangelicalism, releases October 2023. As a gay woman living with the invisible disability of both Lyme disease and rheumatoid arthritis, Amber specializes in bringing messages of diversity, hope and self-acceptance to those who have been pushed to the margins. She is host of the Unashamed Love Collective — a safe haven for LGBTQ people and allies that fosters supportive community. She also leads Cultivating Community Retreats — small, intimate group gatherings that build lasting relationships with like-minded people. Learn more at Patreon.com/AmberCantornaWylde, on social media @AmberCantornaWylde or online at AmberCantornaWylde.com.