How to explain Gaucher disease fatigue to friends and family

Last updated June 25, 2025, by Susie Strachan
Fact-checked by Ines Martins, PhD

Fatigue is one of the most common symptoms of Gaucher disease. It’s often invisible, which can make it hard to explain to your family and friends. You may look “fine” on the outside, even when you’re exhausted on the inside.

Describing what your exhaustion feels like and why it happens can help others see your experience more clearly. When your loved ones begin to understand the real impact of Gaucher fatigue, they may be better able to offer the kind of support you truly need.

Putting Gaucher fatigue into words

Reduced energy levels and Gaucher disease often go hand in hand. Inflammation and other symptoms like anemia, bone pain, and muscle weakness can take a toll on your body and leave you feeling drained.

Fatigue from Gaucher disease also isn’t the same as ordinary tiredness. It’s chronic, which means the fatigue sticks around even if you’ve had plenty of sleep or taken time to rest. It can come and go, or hit without warning, making it difficult to keep up with plans, routines, or daily responsibilities.

Even with treatment, healthy habits, and rest, fatigue may still be a regular part of your life.

Explaining invisible symptoms like Gaucher fatigue can be especially hard. It’s tough to describe something others can’t see or feel. One way to help people understand is by using metaphors. For example, you might say:

• It’s like starting the day with a phone battery that only charges to 50% and drains faster than it should.
• It’s like carrying a heavy backpack all the time, even when I’m standing still.

Simple comparisons like these can help people picture what you’re going through and take it seriously, rather than brush it off.

Starting the conversation with people you love

Most people want to help, but don’t always know what chronic disease support looks like in real life.

Having a conversation about how they can support you when you’re feeling the effects of Gaucher fatigue is a good place to start. Choose a quiet moment when you’re already resting. You don’t need to force the conversation.

Using the right words can help keep the focus on your experience with Gaucher fatigue. For example, use “I” statements such as:

• I’ve been feeling really worn down lately, even though I’m sleeping and taking care of myself.
• I know it might not be obvious, but fatigue is a big part of how Gaucher affects me.

You can also point people to reliable rare disease awareness resources so they can learn about your condition at their own pace, including, Some resources are:

• Gaucher Disease News
• National Gaucher Foundation
• International Gaucher Alliance.

These resources can help when you’re talking about your health with friends or when you’re trying to figure out how to talk to family about your illness.

What support looks like

Supporting someone with Gaucher doesn’t have to be complicated.

Support starts with someone who truly listens, without jumping in with advice or comparing your experience to theirs.

Even if they haven’t felt your level of fatigue, they can still respond with care. Accepting that your fatigue is real can take pressure off you to explain or prove it.

A few ways someone can offer you meaningful support include:

• listening with patience and empathy by letting you share without interrupting or offering advice
• acknowledging what you’re feeling with phrases like “I believe you” or “That sounds really hard
• avoiding minimizing your experience with comments like “Everyone gets tired” or “Just push through”
• offering practical help by giving you a ride, being flexible with plans, or checking in on a tough day.

Fatigue touches so many parts of living with a rare disease like Gaucher, and explaining an invisible illness like this can help your family and friends understand what you’re facing.

Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.