20 Simple Ways To Support Someone With A Chronic Illness
It’s easier than you think to help someone in need
Welcome to Soulful Sunday #15 for April 23, 2023.
If you’re new to The Power of Change, welcome, and thanks for spending a few minutes of your day with me. Included in today’s edition:
I. 20 Easy Ways To Support Someone With A Chronic Illness
II. Master Your Monday - A mindful tip to help you start the week.
20 Easy Ways To Support Someone With A Chronic Illness
Six in ten Americans live with at least one chronic disease, such as heart disease, cancer, or diabetes. Millions more are living with invisible chronic diseases that are neither well recognized nor respected, such as Lyme disease, myalgia encephalomyelitis/chronic fatigue syndrome, depression, fibromyalgia, long covid, and a variety of autoimmune diseases such as Lupus or ulcerative colitis.
I’ve lived with a chronic disease for half my life. I began writing about my experience last year to raise awareness and educate those who downplayed the severity of many conditions.
Chronic illnesses are those that last 3 months or more, require ongoing medical attention, and limit activities of daily living. Some are life-threatening and may result in disability.
For years, I’ve advocated to increase funding for Lyme disease. During this time, I’ve met or spoken with hundreds of patients from all over the world who suffer from chronic, invisible illnesses.
My research and advocacy taught me that regardless of the illness, all patients with chronic disease face similar struggles, but not all patients are treated the same.
I also learned that patient outcomes vary based on the amount of support they receive.
The more support a patient is given, the better the chance they can improve or even achieve remission. The less support they have, the worse their prognosis.
There is one commonality with ALL chronic illness patients:
They wish the people in their lives believed them, understood their illness and offered more support.
What every patient needs
A chronic illness patient doesn’t expect you to know the ins and outs of their illness, but they do need to be believed, especially if they’ve struggled with an invisible illness and the journey to a diagnosis was lengthy.
Questioning the validity of their diagnosis is a surefire way to exacerbate their condition and cause irreparable harm to your relationship.
In many cases, a chronic illness is invisible. These patients have already suffered greatly because a diagnosis was hard to find. They’ve undoubtedly been told many times they don’t look sick. They’ve been dismissed by dozens of doctors and told their symptoms were all in their heads.
Rest assured, just because a patient doesn’t lose their hair or become rail thin doesn’t mean they’re not sick.
For years, I managed to do things that a person who’s well does on a daily basis without thinking; work, care for my child, cook, and manage a house. Most people I knew had no idea I was struggling to do all of them every day.
A chronic illness patient may or may not be homebound.
They may or may not look sick.
But, regardless of the particular situation, I’m certain they all could use support and a little help. When I speak with patients, I ask what they need and how I may help. The answers are very often the same.
Chances are you know someone that is struggling with a chronic illness. If you’re not sure how to help, consider these suggestions from patients.
20 easy ways to support someone with a chronic illness
1. Call or text to check in regularly — if you don’t have the time to call, a quick text goes a long way when someone is feeling isolated and alone. Set a reminder to check in every few weeks.
2. Believe them — don’t suggest their illness may be something it isn’t, easy to diagnose or treat, or not a big deal. Their illness is real, and they’re suffering.
3. Don’t always ask how they’re feeling. This may be counterintuitive, but someone with a chronic illness doesn’t always want to think or talk about how they’re feeling. They may just want to talk with a friend or remember a fun time.
4. Be flexible and understand if they have to cancel plans. They don’t want to cancel and when they do, they feel bad about doing so. Support them, understand why they’re canceling, and tell them you’ll try again soon.
5. Ask if they’d like company. Having a chronic illness is lonely. Sometimes they just want someone to be with. Everyone is busy, but consider taking an hour to sit and talk with a friend. It will make their day.
6. Don’t stop including them in plans. When asked, they always want to join but say no because of how they’re feeling. After the first few years I was ill, I stopped getting invitations. I understood why, but I missed the option to join friends.
7. When you see someone who isn’t well, don’t make them feel like they have the plague. Yes, they’re ill and may not look the same, but they’re the same person inside and they already know what they look like.
8. If someone with a chronic illness participates in a family event, thank them for making the effort. Most times, they don’t feel up to it but are doing it for other people.
9. If a person with a chronic illness has children, rest assured, they need help. Whether you have children or not, find a small way to help. Offer to play catch with the budding baseball player or color with the young artist. Offer to take a child to the library or bookstore. These small gestures mean a lot to the patient/parent and the child.
10. Offer to pick up a meal or run an errand they may be too tired to do. You don’t have to prepare a meal. Yes, they have groceries or meals delivered, but there is an added cost for them to do so.
11. Understand if they’re having a difficult day, and don’t blame them for being down. Remind them of a fun experience or tell them a funny story. Sometimes they just need to laugh. It may be all it takes to keep someone going.
12. Offer to help with something you know may be too strenuous - cleaning out the garage, decluttering, packing away seasonal clothes.
13. Send a note or card to let them know they’re thought of. Buy a box of cards and send one a month.
14. Don’t assume a symptom is something else. I suffered from severe headaches every day. It was part of my illness. It wasn’t a migraine, or the result of a cold/allergy or the flu. Many symptoms occur daily and are part of an illness.
15. Offer to stop by and share a meal or watch a movie. Sometimes they just need someone by their side.
16. Offer to drive them to an appointment. They have many, and sometimes they’d appreciate the company or are just too tired to drive. Recently a dear friend drove me to visit a doctor out of state. It’s a long drive in one day for a healthy person; longer for one who is not well. Having my friend drive was a lifesaver, and I appreciated it so much. It also gave us a chance to catch up.
17. Be okay with listening. Patients don’t expect you to fix their illnesses.
18. Learn more about their illness. For years, I heard that Lyme disease was easy to treat and nothing to worry about. I knew differently because I was living it. If a patient tries to educate you on the reality of their illness, listen and be open to what they’re telling you. If you’re unfamiliar with their illness, take some time to learn more.
19. Offer to start a fundraiser. Many chronic illness patients have experienced a financial setback or have difficulty affording necessary treatments. They don’t want or expect a handout but consider brainstorming ideas to raise money or starting a fundraiser. The ice bucket challenge raised millions. Think about how your idea could help someone afford treatment or get back on their feet.
20. Don’t give up on them. A chronic illness is usually with them for the long haul. They’ve adjusted their life to their illness, but it’s hard to keep going sometimes. A little encouragement is all they may need when they’re ready to give up on themselves.
After living with a chronic illness for twenty-five years and caring for a child with a chronic illness, I can tell you that these twenty ideas will go a long way to helping someone in need.
II. Master Your Monday - A mindful tip to help you start the week.
I’m grateful for the people who support me; they’re the gardeners who help make my soul blossom.
— a patient’s edited version of Marcel Proust's quote
Why Soulful Sunday?
I began The Power of Change to explore the potential to transform your life in meaningful ways.
Being mindful of your life is the first step. It helps you focus on what’s important today and throughout the week.
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Some really good tips here Tracy. It's important to realise that sometimes they're too sick or too proud to ask for what they need.