What is Chronic Illness?
Chronic illnesses are long-term illnesses that either require long-term plans to treat or are incurable at the present time. Chronic illnesses may be diagnosed at any stage of life, and they touch every aspect of someone’s life.
The process of diagnosing a chronic illness is usually lengthy. After diagnosis, the person may go through various stages in their relationship with the illness. Someone who has had a chronic illness for a while has a very different relationship to it compared to someone who is newly diagnosed. This affects what the person needs.
Chronic illnesses include but are not limited to:
- Lou Gehrig’s Disease (ALS).
- Dementia.
- Cancer.
- Irritable Bowel Disease (IBD).
- COPD.
- Diabetes.
- Heart Disease.
- Fibromyalgia.
Please note that people with chronic illness(es) have typically heard every piece of advice regarding their treatment. Unless asked, the treatments you may have heard work for someone else should be kept out of the conversation.
Referring to People with Chronic Illnesses
Chronic illness is a general term, and it encompasses many conditions. Each person develops a unique relationship with their body and its condition, so there is no one-size-fits-all solution for referring to people.
Some people use identity-first language, such as spoonie, crohnie, or a specific name associated with their illness. Others will prefer person-first language, such as person with chronic illness. The best options are to pay attention to how someone refers to themselves or to ask.
Creating an Accessible Environment for People with Chronic Illnesses
Choose Accessible Event Spaces
Chronic illnesses can affect people in many ways. Unfortunately, they can also affect people differently from day to day. In the interest of helping as many people participate as possible, accessible spaces are a must. Additionally, you can’t take a space’s word for it when it comes to accessibility. It’s best to actually check in-person beforehand.
Accessible event spaces are a fantastic choice for everyone. Physically accessible event spaces help people feel safe before, during, and after your event. Sensory accessible spaces help people enjoy your event.
When looking at an event space, you want to confirm that someone who is unsteady walking will not face tripping hazards or that someone using a mobility aid has a clear entry path to the room you’re using. Facilities you might use during the event, such as bathrooms, should also be checked.
Choosing a sensory-accessible event space is a little harder. You would need to check for strong scents, loud noises, bright lighting (including fluorescent), imperfect fabrics, and other things along these lines. Additionally, sensory-friendly spaces should also have a low sensory zone for decompression.
Define Event Expectations Beforehand
Defining event expectations can be as simple as providing an agenda and as complex as enunciating what you want each stage to feel like. Defining these expectations helps people with chronic illnesses plan their energy so they can enjoy your chapter events as well.
When looking at an agenda, you don’t need to make it complex. You could simply label the various blocks of time you expect a chapter meeting to contain or put in when various things will happen at a cookout.
An example cookout agenda:
July 4, 2024 – Main Street Park, Anywhere, NY
- 11 am – Gather together
- 12 pm – Grilling and food
- 1 pm – Chapter business
- 2 pm – Flag football
Providing these details means that someone with a chronic illness can choose when to arrive, how long to stay, and whether they want to allocate additional spoons for things their bodies might consider stressful if it’s a good day.
Allow Breaks and Segways
One of the most challenging aspects for many people with chronic illnesses is maintaining focus for extended periods of time due to symptoms like brain fog. How long is considered extended varies from person to person.
As an organization, we can build breaks into our events, divide our chapter meetings into logical sections, and more. Making these choices to chunk up information helps people with chronic illnesses track it better. For example, you might group all the news from the Sciences auxiliary together.
Additionally, you can also incorporate segways into your speech. For example, “now that we’ve discussed all the challenges Medical is doing, let’s discuss the latest CQ.” Deliberately doing so helps someone rejoin the meeting whether they’ve stepped out to use a restroom or lost focus.
Incorporate Virtual and Flex Options Where Possible
Chronic illnesses are challenging, and no two are the same. However, one of the common challenges is a lack of energy. We can help our members with chronic illnesses by providing virtual and flexible options where possible.
Virtual options can be as easy as doing an audio recording of the business part of a chapter meeting or it can be as complex as delivering a simulcast using a video platform. These choices support all member participation.
Flexible options include sending out agendas, not requiring firm RSVPs, offering additional meeting times, and other options that mean someone does not have to participate on a firm schedule.
Support Dialogue
People with chronic illnesses are their own experts, and they do know what works for them. If someone is open to it or provides suggestions to improve how your events work for them, please consider the ideas.
While not all ideas are feasible (especially budget-wise), small adjustments like choosing a climate controlled location or providing the agenda in a specific format are reasonable. Never turn down an idea simply because it’s different.
Supporting dialouge also applies to the wider organization. We are all different, and the more we can listen to each other, the stronger we’ll be as a whole. Keeping things the way they’ve always been simply because that’s the way it is does us all a disservice.
Feel like this guide is missing something? Let us know at sfcoa@sfi.org.
Want to know more about accessible communication? Check out Accessible Communication 101.