What to do when people don't believe you're sick

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Living with an invisible illness can be challenging, especially when others don't believe you're sick. Discover practical strategies to navigate disbelief, common phrases skeptics use, and how to assertively advocate for yourself.

What to do when people don't believe you're sick:  a photo of an extremly tired young woman sitting beside a bed, isolating alone at home

"When people don't believe you're sick, it can be incredibly frustrating and disheartening." | ©Karniewska / Adobe Stock

What to do when people don't believe you're sick

I have a secret. Well, it's not really a secret, but it might as well be. You see, I live with an invisible illness called fibromyalgia. If you're unfamiliar with the term invisible illness, let me break it down for you. 

An invisible illness is a condition that doesn't have obvious physical manifestations, making it difficult for others to understand and believe the pain and struggles experienced by those living with it. It's like having an internal battle that no one else can see, and sometimes, they don't even believe it exists.

When people don't believe you're sick, it can be incredibly frustrating and disheartening. You find yourself trapped in a constant loop of doubt and disbelief, desperately trying to validate your experiences. The emotional pain that comes with people not believing you have an illness is like a heavy weight crushing your spirit. It's a constant battle to assert your truth and validity, only to be met with skepticism and disbelief. Each time someone dismisses your pain or questions the authenticity of your condition, it feels like a dagger to the heart.

You find yourself questioning your own reality, wondering if maybe you're exaggerating or if there's something wrong with you for not being able to convince others. Doubt starts to creep in, eroding your self-confidence and leaving you feeling isolated and misunderstood.

The toll it takes on your mental health is significant. It's a relentless cycle of frustration, anger, and sadness. You long for the empathy and understanding that seems out of reach. The constant need to prove yourself can be emotionally exhausting, leaving you drained and depleted.

Moreover, the invalidation of your experiences can lead to feelings of shame and guilt. You begin to doubt your own worth and question if you're deserving of support and compassion. It's a cruel twist of fate when the very people who should be offering comfort and understanding become the ones who undermine your struggle.

"When people don't believe you're sick, it can be incredibly frustrating and disheartening."

Invisible illnesses bring their own set of challenges

Invisible illnesses already bring their own set of challenges—constant pain, fatigue, brain fog, and countless other symptoms that fluctuate and make each day unpredictable. But when you add the burden of people not believing you're sick on top of that, it becomes a heavy load to carry. It's as if you're fighting a battle on two fronts—against your illness and against the doubts of others.

However, amidst the pain and frustration, it's crucial to remember that you are not defined by others' disbelief. Your experiences are valid, and your pain is real. Surround yourself with a support system that believes in you and understands the challenges you face. Seek solace in the online communities of fellow warriors who have walked a similar path and can offer empathy and guidance.

Find the strength within yourself to rise above the doubters. Advocate for your needs, educate those willing to listen, and be kind to yourself. Remember that self-care is not selfish; it's essential for your well-being.

Although it can be a long and arduous journey, do not lose hope. There will be moments when you come across individuals who genuinely try to understand and support you. Hold on to those moments, for they are the sparks of light in the darkness of disbelief.

The emotional toll of people not believing you have an illness is profound. It challenges your sense of self, tests your resilience, and can leave deep scars. But remember, you are not alone. Keep fighting, keep advocating, and keep believing in your truth. Your voice matters, and one day, through understanding and awareness, we can break down the barriers of disbelief and build a world where invisible illnesses are acknowledged and validated.

Practical tips for dealing with people who don't believe you're sick

Fear not, my fellow warriors! If you want to know what to do when people don't believe you're sick, use some of these practical tips to navigate this rocky terrain and maintain your sanity.

  1. Educate Yourself: Arm yourself with knowledge about your condition. Understand the symptoms, causes, and available treatments. When you can confidently explain your condition, it becomes harder for others to dismiss your pain as mere imagination. Not that you should have to explain your condition to anyone; sometimes, it does help to be able to do so succinctly and clearly.
  2. Seek Support: Surround yourself with a supportive network of friends, family, or people with the same invisible illness who understand your condition. Sharing experiences and having someone to validate your struggles can make a world of difference.
  3. Speak Up: Be assertive and communicate your needs clearly. When someone questions your illness, calmly but firmly explain how it affects you. Use "I" statements to express how their disbelief makes you feel and emphasize the importance of their support.
  4. Practice Self-Care: Prioritize self-care to manage your symptoms and reduce stress. Engage in activities that bring you joy and relaxation, whether taking a long bath, meditating, or indulging in your favorite hobbies. I can not say this enough: remember, taking care of yourself is not a luxury; it's a necessity.
  5. Document Your Journey: Keep a symptom journal to track your experiences. Documenting your pain levels, triggers, and fluctuations can provide objective evidence of your invisible illness. Sharing this information with skeptics may help them better understand your struggles. I also find my journal useful when I am visiting my doctor!
  6. Advocate for Awareness: Raise awareness about your condition and invisible illnesses. Share articles, personal stories, or educational resources on social media platforms to help debunk misconceptions and encourage empathy.

What do people say when they don't believe you're sick

Now, let's address some common phrases we've all heard when people deny our invisible illnesses and simply don't believe we are sick:

  1. "It's all in your head": Yes, it is in my head, but not in the dismissive way you think. My pain is real, even if it doesn't show on the surface.
  2. "You don't look sick": Just because my pain doesn't have a visible manifestation doesn't mean it's not there. Remember, appearances can be deceiving.
  3. "You're just seeking attention": Trust me, I'd rather be seeking attention for something positive. I'd trade my pain for a moment in the spotlight any day.
  4. "You're just exaggerating": I wish I were. Trust me; I'd love nothing more than to exaggerate my wellness rather than constantly fighting my invisible illness.
  5. "But you were fine yesterday": Invisible illnesses can be unpredictable. Symptoms can fluctuate, and what might seem fine one day can be unbearable the next. It's a rollercoaster ride, and I'm strapped in for the long haul.

Read more: My chronic pain is killing me

Remember, my fellow warriors; you are not alone. Invisible illnesses come in many forms, including fibromyalgia, chronic fatigue syndrome, Lyme disease, and autoimmune disorders, to name a few. The struggle is real, and it's essential to support and uplift one another.

So, the next time you ask yourself what to do when people don't believe you're sick, remember these practical tips and assertively advocate for yourself. 

Educate, communicate, and don't let their disbelief define you. You are a warrior, fighting battles unseen by others. Keep fighting, keep believing, and never let anyone dim your spirit.

We can bring visibility to invisible illnesses, one conversation at a time. Keep sharing your stories, raising awareness, and demanding understanding. We deserve to be heard, believed, and supported.

Article by
Alicia Mayberry

Alicia B. Mayberry, the author of "What to do when people don't believe you're sick," is a writer residing in Texas, defies challenges posed by autism, anxiety, depression, and an auto-immune condition. While working as a primary school teacher, she embraces her passion for writing, recently delving into the realms of short stories and personal essays.