Empowered Conversations: How to Talk About Your Invisible Illness with Friends & Family
For most of us, there’s far more than meets the eye. Many people are living with conditions that can’t be seen, invisible illnesses that alter every aspect of life. It can feel like a huge burden to manage an invisible chronic illness that no one can see, conditions that are often misunderstood by strangers and even the people we love most.
As someone living with ME/CFS, I know the feeling of just wanting to be accepted, acknowledged, and understood by loved ones. But it can be very uncomfortable and even painful to try to explain what we’re experiencing with friends and family. Let me tell you: there is a way.
In this post, I’ll be sharing practical steps for empowering conversations about your illness with loved ones. These strategies will help you prepare your mind, open your heart, and advocate for yourself when talking about your invisible illness with friends and family.
What is an Invisible Illness? Defining These Unseen Conditions
Invisible illness, also referred to as invisible disability, is a mental, physical, neurological, or autoimmune condition that is not visible to others from the outside. These illnesses can impact a person’s energy, sleep, daily activities, cognitive function, and physical movements. Generally, invisible illnesses are chronic and relapsing, with the condition impairing at least one major area of life with symptoms like pain and fatigue.
One of the key traits of invisible illnesses is that because they’re not visible to the naked eye, these conditions are often judged, misunderstood, or invalidated by others.
This places a lot of burden on the individual experiencing the disability, as we might struggle to access adequate accommodations at work, receive effective care from healthcare professionals, and feel truly supported by the ones we love.
Common types of invisible illnesses:
There are thousands of illnesses, disorders, and conditions that may be considered invisible illnesses. But to give you a better idea of what we’re discussing, here are some common types of invisible disabilities that affect millions around the world:
Mental health conditions (e.g., depression, schizophrenia)
Fibromyalgia
Chronic pain or fatigue
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Long COVID
Autism (ASD)
Epilepsy
Cancer
Sleep disorders
Endometriosis
Preparing Yourself For Uncomfortable Conversations
Discussing a difficult topic with someone you love can be an emotionally charged experience.
Tough feelings may arise when expressing something that affects you so deeply, like shame, frustration, embarrassment, or even anger.
That’s why I recommend taking a few steps to prepare yourself before jumping in to preserve your peace and your relationships.
Figure Out How You Like to Communicate Best
We each have our own unique approach to communicating with family or friends, depending on the situation at hand.
If you find that you express yourself most clearly in written form, consider writing a letter or email to the loved one you want to talk about your condition with.
But if you prefer expressing yourself with a face-to-face verbal conversation, invite your family member or friend to meet you in person.
Be Your Own Best Advocate
It takes a level of assuredness in who you are and what you’re going through to advocate for what you need, despite how people may respond to what you tell them.
Be prepared to protect yourself and your peace before exposing your vulnerability. Assume that no one is going to fight harder for your well-being than you. So take charge of your life and always do what you know is best for you.
Suspend Expectations & Be Willing to Accept What You Can’t Control
I want you to do two things before starting an uncomfortable conversation with friends or family:
Be prudent about who you choose to open up to.
Not everyone in your life is deserving of this information, or for you to open your heart to them. Be wary of who you choose to invest the time and effort in trying to gain understanding from.
2. Don’t set rigid expectations, and be prepared to accept that they may not react as expected.
The hardest conversations are the ones we go into with preconceived notions. You may cause undue harm to yourself if you expect your loved one to immediately accept and support your struggles and needs. Growth and understanding can take time, so hold space for them to digest what you’re saying and resist getting defensive.
How Do You Explain Your Invisible Illness To Loved Ones?
We all have the desire to be seen and understood by the people we care about. Talking about your invisible illness with friends and family might feel intimidating, but it’s important in helping them understand what you’re going through.
It will also allow loved ones to take a more active role in supporting you and your needs, so you don’t always have to be requesting help and explaining yourself.
Make your Goal Crystal-Clear
Before any conversations, start by defining for yourself what you really want to convey. Make your goal for this talk simple and crystal-clear:
‘I want my friend to know that it’s not their fault when I back out of social plans.’
‘I want my husband to not feel so frustrated when I ask for help with laundry.’
‘I want my mom to know what my symptoms actually feel like when I’m having a flare-up.’
Don’t put pressure on yourself to solve everything in one talk. It’s all about getting started.
2. Set an Appropriate Time & Place
Speak to each person individually, as it prevents groupthink and too many energetic responses in one place. OR if it drains you to do many one-on-ones, get it over with in one group.
Put some thought into where you want to meet and at what time. Try to choose a time of day and location where you’ll feel relaxed and open, and least likely to be dealing with an energy crash.
Make sure you’ve thought about how many people you’ll speak to at once. You can either opt to speak to one person individually, which has the benefit of limiting too many opinions, feedback, and stimuli in the room.
Or you can choose to speak to the whole group of friends or family at once if coordinating too many one-on-ones will drain you. Whichever you choose should suit your unique needs.
3. Start the Conversation with an Open Mind
It’s important to go into the conversation with an open mind and heart. Approaching sensitive topics through the frame of feeling defensive, shameful, or rigid about what you expect to happen can cause the conversation to stall, devolve, or disempower you.
When you’re ready, start by sharing that you’re doing okay, but you’re making it a priority to take care of yourself and that they are important to you in this process.
Then consider asking them what their current understanding of your illness is. State that if they’re open to it, you want to share more information about it with them.
4. Share More, Stop, Then & Actively Listen
When you feel safe to open up, take the opportunity to share more with your loved one. You can talk about things like:
Goals
Health or emotional needs
Boundaries
Fears and worries
Your abilities (or lack thereof) in daily life
Once you’ve touched on the most important points, the next step is crucial in where the conversation goes next: stop, and turn it over to your friend or family member to let them process and respond. Make sure you’re practicing active listening and open body language, so you hold space for their feelings too.
5. Clarify Your Feelings & Ask For What You Need
As the conversation rounds out, make sure you clarify any feelings you haven’t fully expressed yet. This is the time to ask for what you need moving forward.
Maybe they can help you find a mental health professional, join you in a support group, or assist with fatiguing errands. Or maybe just let them know that a weekly phone call would really lift your spirits.
6. Invite Them to Follow Up Later with Questions or Information
If all has gone well, invite your loved one to follow up with you later. They should know that you’re willing to be open about your illness beyond this initial conversation, because they might inevitably have questions or want more information later.
And sending them educational online resources like this one to do more research can save you a lot of time and energy.
An important reminder: bolster yourself against unsolicited advice or immediate judgements. The hope is always that our loved ones will be empathetic and loving, but sometimes things don’t go as planned. Don’t forget to be your own best advocate. Protect your peace.
Further Support for Talking About Your Condition
Looking for more advice on how to talk about your condition with others? The University of Vermont offers this useful worksheet with quotes and prompts. And his Montgomery Hospice guide might prove helpful, as well.
My platform at CarolineNiederman.com (CNN Courage, LLC) is also here to support you in your journey with an invisible chronic illness like ME/CFS or long COVID.
I provide useful free resources to empower you in managing your condition, and educational content to help your loved ones and healthcare practitioners help you too.
You’re always welcome to reach out to me here at CarolineNiederman.com or LinkedIn for more guidance, or to book me for a speaking event.
