Living With a Fluctuating Disability: How to Explain Your Good Days and Bad Days to the NDIS

Your support needs don't disappear just because you have a good day. Here's how to explain the reality of living with a fluctuating disability and prepare for NDIS planning conversations.

Imagine being asked what you can do independently.

You explain that you can shower, prepare meals, go shopping and attend appointments. All of this is true — on some days.

What may be harder to explain is that on other days, fatigue, pain, mobility difficulties or cognitive symptoms mean you need assistance with the same activities. You might manage an appointment but spend the rest of the day recovering. You might prepare a meal one evening but be unable to stand long enough to cook the following day. You might complete a task at high risk of injury or harm.

This is the reality for many people living with fluctuating disabilities.

What is a fluctuating disability

A fluctuating disability is a condition in which symptoms, functional abilities or support needs change over time.

For some people, changes happen throughout the day. For others, symptoms vary from one day to the next, occur in episodes or worsen following physical or mental exertion.

This can affect people living with conditions such as multiple sclerosis, chronic pain, autoimmune conditions, chronic fatigue, epilepsy and psychosocial disabilities, among others.

Fluctuations may affect:

- Mobility: Walking, standing, transferring or moving safely around the home and community.

- Self-care: Showering, dressing, grooming and managing personal routines.

- Communication and cognition: Remembering information, concentrating, processing conversations and making decisions.

- Physical health: Managing symptoms, medication routines, nutrition and disability-related health needs.

- Domestic life: Preparing meals, cleaning, laundry and shopping.

- Relationships and community participation: Maintaining relationships, attending appointments, participating in activities and managing social demands.

- Self-management and safety: Organising daily responsibilities, recognising when help is needed and managing risks.

These examples are relevant to understanding daily life and support needs.

Why it is important to explain more than your best day

When discussing disability support needs, it can be tempting to focus on what you manage independently.

You may want to demonstrate your abilities, maintain your privacy or avoid feeling that your disability defines you. You might also worry that acknowledging difficulties will make others underestimate your potential.

But describing your strengths does not mean overlooking the assistance you need.

Consider two people who can both prepare a meal.

One can do so safely and consistently without assistance. The other can prepare a meal on a good day but sometimes needs help with chopping ingredients, standing at the stove or completing the task safely. They may also need to rest for several hours afterwards.

The activity looks the same from the outside, but the support required is different.

Being able to complete a task occasionally does not necessarily mean you can complete it reliably, safely or without support.

When explaining your circumstances, describe your abilities alongside the conditions under which you can use them, the assistance you require and the consequences when symptoms worsen.

How to describe your changing support needs

The following approach can help you prepare for conversations with your Support Coordinator, allied health professional or NDIS planner.

1. Explain what you can do and what help you need

Rather than answering only yes or no when asked whether you can complete an activity, explain the full picture.

For example:

“I can sometimes shower independently. When my fatigue and balance difficulties are worse, I need assistance to shower safely. If I have to push through without enough rest, I struggle with other activities for the remainder of the day.”

This communicates your abilities, your support needs and the impact on your daily life.

2. Describe how often your needs change

Try to give realistic examples of your typical experience.

You might explain that you need help with meal preparation several days a week, that your mobility changes unpredictably, or that you require additional assistance during symptom flare-ups.

If possible, describe how often these changes occur and how long they tend to last.

Avoid guessing or feeling pressured to provide an exact number if you don't know. Explain what you have observed and what remains unpredictable.

3. Explain what happens before and after an activity

An activity can have consequences that are not immediately visible.

For example:

“I can attend a medical appointment, but organising transport, getting ready and travelling take a lot of energy. After the appointment, I often need to rest and may not be able to prepare food or complete household tasks that day.”

This helps others understand the overall impact of an activity rather than just whether you attended.

4. Explain what happens when assistance is unavailable

If you cannot complete a task, explain the practical outcome.

Do you miss meals? Is personal care delayed? Do household tasks accumulate? Do you withdraw from social activities? Does the risk of falling increase? Do you rely on family members who are already providing substantial informal support?

Describe what actually happens, rather than what you think someone expects to hear.

5. Explain the support that makes a difference

A strengths-based approach recognises your abilities and considers what enables you to participate in daily life.

Perhaps a support worker helps you prepare meals so you can conserve energy. Maybe you need assistance with transport to attend appointments or support to maintain a routine during periods of poor mental health.

Explain what the assistance enables you to do, the barriers it helps address and what your day looks like when that support is unavailable.

The aim is to describe your needs accurately, not to exaggerate your difficulties or minimise your abilities.

Keeping a record of good days and difficult days

You do not need to write a detailed diary every day. Even brief notes can help you remember examples when preparing for an assessment or appointment.

Consider recording the following information:

What to record | Questions to consider

Activity | What were you trying to do?

Symptoms and circumstances | What affected your ability to complete it?

Assistance | What help, prompting, supervision or equipment did you need?

Frequency | How often does this happen?

Impact | What happened afterwards, including recovery time or missed activities?

Goals | What would you like to do with the right support?

For example, you might record that you prepared lunch independently on Monday but required help on Tuesday because fatigue and dizziness affected your ability to stand safely. You could also note whether you needed assistance with another activity later that day.

Over time, these records may help you identify patterns and explain your circumstances more clearly.

Where appropriate, information from treating professionals can also help explain your disability and its functional impact. Keep relevant reports and recommendations, particularly if your needs are complex or changing.

You may also find it helpful to have a trusted person who understands your daily experiences help you prepare. Depending on the arrangements for your assessment, this could be a family member, friend, advocate, Support Coordinator or support worker.

Your goals matter, too

Explaining fluctuating support needs is not simply about describing what is difficult.

It is also about explaining what you want your life to look like.

Perhaps you want to attend more community activities, maintain employment, study, manage more of your daily routine or reduce the amount of assistance you need with a particular task.

The right supports may help you build skills, conserve energy, manage barriers and work towards those goals.

Needing assistance today does not mean you cannot develop greater independence over time. Equally, building skills should not require you to pretend that your disability has stopped affecting you.

Your abilities, your support needs and your aspirations can all be part of the same conversation.

You don't have to prove your disability by having a bad day

Living with a fluctuating disability can be exhausting, particularly when you feel that you must continually explain why your needs change.

You might be independent in one situation and need considerable assistance in another. You might appear well while managing significant symptoms that other people cannot see.

Both your strengths and your difficulties deserve to be understood.

When preparing for an NDIS planning conversation, focus on describing your real experiences as accurately as possible. Include what you can do, what makes it possible, what support you need, how frequently you need it and what happens when your circumstances change.

You should not have to minimise your difficulties to demonstrate your capabilities, or minimise your abilities to explain your support needs.

A clearer understanding of your daily life can help others better understand the support that may assist you to work towards your goals.

How Sense of Care can help

At Sense of Care, we understand that every person's circumstances are different.

To assist you we have put together a spreadsheet which can be used to collate information about your support needs. You can find our Sense of Care Support Needs Log on our Resources and NDIS help page.

At Sense of Care, we provide a range of services that can be tailored to your individual needs and goals. Support Coordination can assist you in understanding your funding, navigating service options, and building a network of supports that works for you. Our Occupational Therapy and Physiotherapy teams can help identify barriers to independence and recommend practical solutions to improve your everyday functioning. Our dedicated support workers are experienced in providing personalised assistance to meet each person's unique requirements.

What sets us apart is our commitment to genuine choice and control. We do not expect or encourage participants to use multiple services simply because they are available through our organisation. Instead, we support you to make informed decisions about who delivers your supports and will always respect your right to choose the providers that are the best fit for you.

If you are preparing for an NDIS planning conversation and are unsure how to explain your changing needs, our team can discuss the support options available to you.

Visit "Sense of Care" (https://www.senseofcare.com.au/) to learn more about our services.

Your goals and our goals. Barriers are there to be broken.

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Disclaimer: This article provides general information and is not medical, legal or individual NDIS planning advice. Always check the official "NDIS website" (https://www.ndis.gov.au/) for current information