Coping with Invisible Illness: Strategies for Managing What Others Can’t See

“Do I have to bleed for people to notice my pain?”

So often for those with invisible illness, symptoms like pain and fatigue are misunderstood or not believed because they are unseen. 

What even is an invisible illness? Simply put, it’s a condition that isn’t immediately apparent to others. Unlike visible disabilities, invisible illnesses don’t often show outward signs, which can make them harder for others to understand or believe. 

Some examples of invisible illnesses are: Autoimmune diseases (Lupus, Hashimoto’s, Rheumatoid Arthritis), Chronic pain conditions (Migraines, Endometriosis, Fibromyalgia), Neurological disorders (Epilepsy, Multiple Sclerosis), Mental health conditions (Depression, Anxiety, PTSD), Chronic fatigue syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS), Long COVID, Irritable Bowel Syndrome (IBS).

Because symptoms can’t been seen, people with invisible illnesses are often misunderstood, dismissed, or told they “don’t look sick”. 

Invisible doesn’t mean imaginary. 

These conditions are just as real and valid as any other illness and they profoundly impact day to day life. On top of all that an illness brings, those with an invisible illness often experience another layer of emotional strain that includes the disbelief, dismissal, and even shame. 

This post is intended to offer validation, tools, and guidance for anyone navigating life with an invisible illness, or even those wanting to better support someone with an invisible illness.

The Unique Challenges of Invisible Illness

One of the hardest parts of living with an invisible illness is the disconnect between what you’re experiencing and what others perceive. You may hear things like:

“But you don’t LOOK sick.”

“You were fine yesterday.”

“Maybe you just need more sleep.”

Over time, these comments can eat away at your sense of self-trust. You might even begin to down your own body or push through symptoms to prove something to others. The effort to be “believable” can come at a high cost. There’s a unique grief that comes with not being believed and that can lead to worsened symptoms, emotional exhaustion, and isolation.

Emotional Coping: Grieving the Loss of “How Things Used to Be”

Many people with chronic illnesses experience grief. Grief for their old life, their old body, their old energy, their old relationships, you name it!

Invisible illness can alter your identity, routines, relationships, and even your dreams for the future. It’s okay to mourn that. Make space for the emotions that bubble up whether it’s sadness, anger, and/or resentment.

Setting Boundaries When People Don’t Understand

When living with an invisible illness, boundaries become essential. You may need to say “no” more often, cancel plans last minute, or adjust how you engage socially or professionally.

Some helpful boundary-setting phrases might include:

“I’d love to come, but I need to rest today.”

“I’m not able to do that right now, but I appreciate you thinking of me.”

“My health is unpredictable, so I can’t commit, but I’ll let you know if I’m able.”

Notice that these don’t come with detailed explanations or justifications about your limitations. Your body is already doing the talking, just listen! 

The “spoon theory”, a metaphor created by Christine Miserandino, can also be helpful in explaining energy limits to others. If you start each day with a limited number of spoons (units of energy), each activity takes one (or more) away. When you’re out for the day, you’re out. Some days, even taking a shower takes more spoons than the previous day. Listening to your body and recognizing those limits becomes essential to daily life.

Living in Fluctuation and Uncertainty

Invisible illnesses are often unpredictable. Good days may be followed by crashes. Flare-ups may have no clear cause. This unpredictability can lead to frustration, guilt, and fear of making plans.

One powerful shift can be learning to pace yourself. Rather than doing as much as possible on “good” days, try balancing activity with rest. Some people call this “activity smoothing” or “energy budgeting”.

The key becomes consistently checking in with yourself to know when a shift might be needed.

Advocating for Yourself in Medical and Professional Spaces

Many people with invisible illnesses have had the experience of being dismissed by a healthcare provider. Although I wish that you never have to experience this, learning to advocate for yourself can be empowering.

Tips for advocacy: 

• Bring notes or a symptom tracker to appointments

• Use clear, specific language such as “This symptom impacts my ability to work/function/sleep/etc.”

• Ask directly for referrals or testing if you feel overlooked
  

In work settings, you may be eligible for accommodations under the ADA. This could include flexible hours, remote work, or extended leave. YOU decide when, how, and if you disclose your condition. 

Living with an invisible illness is lonely. Every day, you wake up and navigate a world that wasn’t built for you. That takes resilience, strength, and courage! 

Whether you’re in a season of grief, rebuilding, or just making it through one moment at a time, you don’t have to do it alone. 

We’d love to be a part of your support team. Reach out to connect with a therapist!