Talking About Fibromyalgia: What to Tell Family and Friends Who Don’t Understand

Living with fibromyalgia can feel isolating at the best of times, but perhaps nowhere is this more apparent than when trying to explain your condition to family and friends. The invisible nature of the illness, combined with its unpredictable fluctuations, can make these conversations feel like an uphill battle. Yet having these discussions is crucial for maintaining relationships and ensuring you get the support you need.

Why These Conversations Are So Challenging

Invisibility

One of the biggest hurdles we face is that fibromyalgia doesn’t come with visible symptoms. There’s no walking stick, no obvious sign that something is wrong. On the surface, we might look perfectly fine, even when we’re struggling with overwhelming pain and fatigue. This invisibility can lead others to question the validity of our experience or assume we’re exaggerating our symptoms.

I’ve lost count of the number of times I’ve heard “but you look fine” or “you seemed okay yesterday.” These well-meaning comments sting because they invalidate what we’re going through internally. People often struggle to understand that chronic illness exists on a spectrum that isn’t always visible to the outside world.

The Chronic Reality

Unlike a broken bone that heals or a cold that runs its course, fibromyalgia is a chronic condition. This means it’s something we live with long-term, and for many of us, it’s a lifelong companion. The concept of “getting better” in the traditional sense often doesn’t apply, which can be difficult for loved ones to grasp.

Well-meaning family members might suggest various cures they’ve read about online, or express frustration that we’re not “getting better” despite treatment. The reality is that managing fibromyalgia is about finding ways to live well with the condition, rather than curing it entirely.

The Fluctuation Factor

Perhaps one of the most confusing aspects of fibromyalgia for others to understand is how much our symptoms can vary from day to day, or even within the same day. Yesterday I might have managed a 5km run, but today getting dressed feels like an enormous task. This unpredictability can seem contradictory to those who don’t understand chronic illness.

Some people interpret these fluctuations as inconsistency or even deception. They might think we’re being selective about when our symptoms appear, not understanding that this variability is actually a hallmark of the condition.

When Relationships Suffer

Unfortunately, not everyone in our lives will be understanding or supportive. Some people simply refuse to acknowledge invisible illnesses or believe that chronic conditions are “real.” In my own experience, I’ve had to make the difficult decision to distance myself from certain relationships where my illness was consistently dismissed or minimised. .

Whilst it’s painful to lose relationships over something beyond our control, protecting our mental health and wellbeing sometimes means stepping back from those who consistently invalidate our experience. However, many difficult conversations can be navigated successfully with the right approach, potentially saving valuable relationships.

When I took part in an NHS pain management course last year, communication was a topic that came up. As a group, we spent time thinking about some of the most common interactions we have had with our various illnesses and thought about what a good response might be. Here are some suggestions:

When someone asks what fibromyalgia is:

“Fibromyalgia is a chronic condition that affects how my nervous system processes pain signals. Essentially, my brain receives and amplifies pain messages differently than it should, which means I experience widespread pain and fatigue that can be quite debilitating. It’s recognised by medical professionals worldwide, but because it’s an invisible illness, it can be hard for others to understand.”

When someone suggests you “just need to exercise more” or tries to offer a cure:

“I really appreciate that you want to help, and I know your suggestions come from a place of caring. I work closely with a medical team to manage my condition, and we’ve tried various approaches. Fibromyalgia isn’t something that can be cured with simple lifestyle changes, though gentle exercise and good self-care certainly help me manage my symptoms.”

Addressing the “But You Look Fine” Comments:

“I understand why it might seem confusing because I do my best to present myself well when I’m out and about. Fibromyalgia is what’s called an invisible illness – the pain and fatigue I experience aren’t visible from the outside. Just like someone with diabetes or heart disease might look perfectly healthy, my condition affects me internally in ways that aren’t obvious to others.”

When someone points out inconsistencies in your abilities:

“One of the challenging aspects of fibromyalgia is how unpredictable it can be. Some days my symptoms are more manageable, whilst other days they’re overwhelming. Yesterday was a good day, which allowed me to do more, but today my body needs rest. It’s not that I’m being inconsistent – it’s just the nature of living with a fluctuating chronic condition.”

When declining invitations or asking for accommodations:

“I’d love to join you, but I need to be honest about my limitations. Large gatherings can be overwhelming when I’m managing pain and fatigue. Could we perhaps meet for a shorter coffee date instead? I find I can enjoy myself more when I’m not worried about overdoing it.”

Communication Tips for Better Understanding

Be Patient but Firm

Remember that education takes time. Some people need to hear information multiple times before it sinks in. Be patient with genuine questions, but don’t feel obligated to repeatedly justify your experience to those who consistently dismiss it.

Use Analogies That Resonate

Sometimes comparing fibromyalgia to more understood conditions can help. You might explain that like diabetes, it’s a chronic condition that requires ongoing management, or compare the unpredictability to how someone with asthma might have good days and bad days.

Share Resources

Pointing people towards reputable sources of information can be helpful. The NHS, Fibromyalgia Action UK, or Versus Arthritis websites have excellent resources that explain the condition in medical terms, which some people find more convincing than personal accounts.

Know When to Walk Away

Recognise when conversations aren’t productive. If someone consistently refuses to acknowledge your illness or becomes argumentative, it’s ok to politely end the discussion. You don’t owe anyone endless explanations of your health condition.

Identify Your Allies

Focus your energy on relationships with people who show genuine interest in understanding your condition. These are the people worth investing time in educating and building stronger connections with.

Be Specific About Support

Rather than hoping people will intuitively know how to help, be specific about what support looks like for you. This might be understanding when you need to cancel plans, offering to drive you to appointments, or simply checking in during difficult periods without trying to fix everything.

Consider Support Groups

Sometimes the most understanding conversations happen with others who share similar experiences. Online fibromyalgia support groups or local chronic illness communities can provide the validation and understanding that might be missing elsewhere.

Moving Forward with Confidence

Having these conversations becomes easier with practice, though they may never feel entirely comfortable. Remember that you’re not responsible for managing other people’s reactions to your illness. Your job is to communicate your needs clearly and kindly, whilst protecting your own wellbeing.

Some relationships may naturally drift away as people struggle to understand chronic illness, and whilst this is painful, it often makes space for more meaningful connections with those who genuinely care about your wellbeing.

The goal isn’t to convince everyone to become fibromyalgia experts, but rather to create an environment where you feel supported and understood by the people who matter most. With clear communication, patience, and appropriate boundaries, many of these difficult conversations can lead to stronger, more authentic relationships built on mutual understanding and respect.

Have you run into difficulties when trying to explain about your chronic illness to others? How have you dealt with this?