Being a Patient and Invisible Illnesses
Supporting One
by Jillian Amodio, LMSW
Invisible illnesses and diseases affect a large portion of the population. These can span a wide range of problems including physical illness, mental illness, and cognitive disorders. Aside from the daily living, physiological and psychological struggles, people with invisible illness also struggle with social stigma and often feel lonely or misunderstood. By now you may be wondering what kind of invisible illnesses affect people in these ways, and if you know anyone who is affected? Common Invisible illnesses include: Rheumatoid Arthritis Chronic Fatigue Syndrome Chronic Pain Conditions Connective tissue diseases (Ehlers-Danlos Syndrome) Fibromyalgia Migraines
It is also important to manage your own expectations. Life after illness onset looks different than the one we had previously planned. There is often a grieving period that comes with a new diagnosis of an invisible illness. It is important for the patient and their support systems to navigate the cyclical nature of grief together. Despite the “new normal,” your life can continue to be rich and fulfilling. Are there different activities, goals, and aspirations that you would like to pursue? If so, what barriers are you facing, and what tools, strategies, and accommodations can make them more accessible? How to Support Someone With an Invisible Illness When someone shares their diagnosis and their struggle with you, it is important to listen without judgment. If you have questions, approach them with compassionate curiosity, but avoid being condescending, dismissive, or offering advice until you have been invited to give some. Education is empowering. When someone in your life shares that they have an invisible illness, pursue knowledge to understand what it is that they are experiencing. Familiarize yourself with their world to better be able to support and understand them. Ask people suffering with an invisible illness what they need. Sometimes people need tangible support, sometimes they just need a listening ear, and sometimes they don’t need anything. Don’t be afraid to ask what you can do to help, but also be ready to honor their boundaries if and when they are set. By doing so, you can help them feel “seen” and supported.
Lupus Celiac ADHD Alzheimers Traumatic Brain Injury Anxiety Personality Disorders Post Traumatic Stress Disorder Phobias Depression How to Cope With Invisible Illnesses
Learning to live with invisible illnesses can be challenging. Having unseen struggles often contributes to feelings of depression and lower life satisfaction. Many people with invisible illnesses report feeling misunderstood and that they are treated as though they are “faking it” or “overreacting.” It is important for patients to build a solid network of social and emotional support. This can include engaging a therapist (preferably one skilled in navigating chronic or invisible conditions), joining support groups where you can connect with others who are experiencing a similar circumstance, assembling a team of health care providers, and leaning on the support of friends and family.
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