“But you don’t look sick”: Dealing with the invisibility of invisible illness.

Photo by Ivan Aleksic on Unsplash

Living with an invisible illness is challenging. You are often dismissed or doubted, even by healthcare professionals. Accessing needed support and resources may be difficult. This article will explore the challenges and discuss coping strategies for invisible illness.

What is Invisible Illness?

Invisible illness or invisible disability is a condition that is not obvious. People with invisible illnesses often look healthy.

Here are a few examples of invisible illnesses:

• Autoimmune disorders such as lupus or rheumatoid arthritis.
• Mental health conditions such as depression or bipolar disorder
• Pain conditions such as fibromyalgia or migraines
• Dysautonomias such as postural orthostatic tachycardia syndrome (POTS) or non-cardiogenic/vasovagal syncope (VVS)
• Neurological conditions such as epilepsy or Parkinson’s disease.

Invisible Illnesses: The Challenges and Struggles

Invisible illnesses present many challenges and struggles. These struggles impact you and your family. You may lose your sense of identity.

Some emotional struggles of invisible illness:

• Anger
• Grief
• Anxiety
• Isolation
• Depression
• Loneliness
• Frustration

Physical challenges of invisible illness can include:

• Pain
• Fatigue
• Brain fog
• Insomnia
• Sensory problems
• Mobility problems

Some examples of other challenges faced by people with invisible illness:

• Stigma and discrimination.
• Difficulty accessing support and resources.
• Inability to participate in activities once enjoyed
• Difficulty maintaining relationships, employment, and other aspects of life
• Lack of understanding and support from others, including healthcare professionals.

Why should we talk about invisible illness?

Talking about invisible illness can:

• Help reduce stigma
• Encourage people to seek help
• Create an educational environment
• Help people connect with others who understand.

Photo by Simon Berger on Unsplash

Coping with Invisible Illness

There are many ways to cope with an invisible illness. Find the strategies that work best for you.

Sometimes, coping may mean getting into bed under the covers, turning off the lights, closing the door, and letting your friends and family know you need some quiet time. Other times, coping may involve advocating for yourself with your medical provider.

Additional strategies for coping with invisible illness:

• Take breaks when you need them. Don’t try to push yourself, you will only feel worse in the long run.
• Educate yourself about your illness. Education is key to understanding your illness.
• Communicating with others about your illness and your limitations. Communicating with others is important, so they can support you better.
• Setting boundaries and managing expectations with others is crucial to avoid you over exerting yourself. When setting your boundaries, be clear about your limits. Don’t be afraid to say no.
• Finding and joining support groups. Support groups can provide a safe space to connect with others. Support groups can be found both online and within your local community.
• Practice self-care. Self-care is essential. Self-care includes things like getting enough sleep, eating a healthy diet, and regular exercise or stretching.
• Advocating for invisible illness. It’s important to advocate for yourself and others. Do this by sharing your story, raising awareness, and challenging misconceptions. I use writing as an advocacy tool to raise awareness about invisible illnesses. Others choose to advocate by sharing their personal stories directly with others.

Communicating with Others

When communicating with others about your illness, be clear and direct about your limitations, and needs.

More tips for communicating with others:

• Educate others about your illness
• Be assertive, and use simple language
• Set realistic expectations for yourself and others
• Be specific about your symptoms and limitations
• Advocate for yourself. Don’t be afraid to speak up for your needs.
• Be patient and understanding. It is hard for others to understand what you are going through.

Conclusion

Life with an invisible illness is challenging, but there are ways to cope and thrive. You can live a fulfilling life by communicating with others, setting boundaries, and practicing self-care. Additionally, advocating for invisible illnesses helps to raise awareness and reduce stigma. Don’t be afraid to ask for help or take breaks when needed. Be patient with yourself and others. You are not alone. There are millions of us out there who are thriving with invisible illness. Find the right support and coping mechanisms to help you live life to it’s fullest potential.

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