Living with Invisible Chronic Illness: The Emotional and Mental Health Journey

Invisible illness is the name that we give to conditions such as Fibromyalgia, Chronic Fatigue Syndrome, chronic pain, autoimmune diseases, Ehlers-Danlos Syndrome, Long-COVID, and other conditions.

These conditions are often misunderstood because others cannot see how much you suffer physically, emotionally, and mentally, or the impact that it has on every aspect of your life.

I know this on a personal and professional level, as I struggle with several invisible illnesses, and I am a Licensed Professional Counselor specializing in the emotional and mental treatment of chronic pain and illness.

Living with these conditions often means navigating not only physical pain but also the invisible weight of misunderstanding and stigma.

Why It Takes So Long to Get Diagnosed with an Invisible Illness

On average, it can take up to five years or more to receive a diagnosis for an invisible illness. For women, it can sometimes take even longer due to systemic bias in the medical field.

There are multiple reasons for delayed diagnosis, including fluctuations in symptoms, inadequate or insufficient diagnostic testing procedures, a lack of training in the medical community on complex health issues, and other factors. This delay can create increased physical symptoms due to the inaccessibility of treatment during this time and emotional distress from feeling unheard and unsupported.

Before diagnosis, we often feel gaslighted by doctors who dismiss our symptoms as anxiety, depression, trauma, grief, illness anxiety (formerly hypochondria), or attention or drug-seeking.

Personally, I have suffered from chronic illness since early childhood. Fatigue, pain, muscle spasms, rapid heartbeat, dizziness, and other symptoms were part of my daily life. I was often dismissed as lazy or attention-seeking by most doctors.

At 14, I was diagnosed with Scoliosis; at 21, I was diagnosed with Chronic ITP, a condition where the spleen kills off the body’s platelets; and then it wasn’t until five years after being debilitated by daily muscle spasms in my neck, at the age of 36, that I was diagnosed with Fibromyalgia and a handful of other autoimmune conditions.

These long years of uncertainty often leave people feeling invisible, not just medically, but emotionally—as though their reality is constantly questioned.

The Mental Health Impact of Chronic Illness

The emotional toll of living with chronic illness often spans every area of our lives. These are just a few examples of how living with chronic illness can impact our emotional and mental well-being.
Hopelessness: We often feel that our symptoms will never improve and we will never regain the vitality of life again, especially during the diagnostic phase, but also when treatments are mostly ineffective.

Isolation: Due to physical limitations that prevent participation in certain activities, the inability to sustain energy levels for activities, or the inability to relate to others, we often feel alone.

Guilt: We often feel like we are burdening our loved ones or feeling too dependent on them. We also feel that we are responsible for our illness, as though we somehow caused it by not taking care of ourselves.

Ableism: We are often not accommodated at work or in other areas of life due to either not having a diagnosis or a lack of understanding. As well, the media often generates what is termed “inspiration porn” of disabled bodies who were able to overcome their disability and accomplish an incredible feat. In reality, this is a small percentage of people experiencing disability and often creates false comparisons to disabled bodies, in addition to failing to mention accessibility differences in treatments. This creates a cultural stigma against people with chronic illness that we are not trying hard enough.

Grief: Those of us experiencing chronic illness often wish for and work toward recreating the life we had before the onset of symptoms. Due to this, we experience the stages of grief continuously with varying intensity throughout our journey.

Loss of Purpose and Identity: As our limitations increase, we may lose access to activities that give our lives meaning and purpose, such as work, hobbies, social events, exercise, or volunteering. Many of us struggle to figure out who we are now that we are no longer the “worker,” the “runner,” the “fun friend,” and so on.

All of these factors can increase anxiety and depression and create decreased mental health outcomes for those of us experiencing chronic illness. Even when we intellectually understand our limitations, emotionally reconciling them can feel like a lifelong process of acceptance and adjustment.

Coping Strategies for Living with Chronic Illness

For those of us experiencing chronic illness, here are a few tips and resources to help manage the emotional and mental impact.

• Self-Compassion: Practicing self-compassion can help reduce the intensity of emotions we experience, while also allowing us to extend grace to ourselves for our limitations.
• Join Support Groups: Connecting with others who can relate to your experience in a nonjudgmental space can be incredibly healing. Consider groups such as the U.S. Pain Foundation, Oregon Chronic Illness Advocacy and Support Facebook Group, and The Sick Chicks.
• Therapy: Finding a therapist who specializes in chronic illness can be life-changing. Through the therapy journey, you can learn how to reduce the intensity and frequency of grief emotions, feel validated, believed, and supported, increase social connection, and redefine your life and purpose with chronic illness.

These approaches don’t erase the pain, but they can help you build a sense of agency and connection amid the uncertainty.

How to Support a Loved One with Chronic Illness

If someone you care about lives with an invisible illness, there are meaningful ways to support them:

• Believe their experience and validate their emotions.
• Offer to help advocate for them at medical appointments and ask them what they need.
• Extend patience. Find activities that your loved one can do and set aside time to engage with them on their terms.
• Acknowledge how difficult this journey is for them and how much time and energy they are putting into researching their illness, going to medical appointments, trying new treatments, and attempting to keep up with daily life demands.
• More than anything, ask how you can show up for them and be a consistent presence in their life.

When we feel seen and supported by those closest to us, the invisible burden of illness becomes a little lighter to carry.

About the Author, Rose Walker

As a Licensed Professional Counselor specializing in chronic pain therapy and trauma counseling, I understand how isolating it can feel to live with invisible illness. My person-centered approach provides a safe, supportive space to process anxiety, grief, and the emotional impact of chronic health challenges.

I offer telehealth therapy to clients across Oregon and Washington. If you’re looking for a compassionate trauma-informed therapist who understands the mind-body connection, I’d be honored to support your healing journey. Fill out the new client form to get started.