What is an Invisible Illness?
I never gave this topic much thought, till I was diagnosed with Lupus – Systemic Lupus Erythematosus – an inflammatory disease where your body attacks it’s own tissue, it involves the joints, skin, kidneys, blood cells, brain, heart, and lungs – a disease I knew nothing about! Till 2007 when my world changed forever. Suddenly I was trying to figure out ways to cope with joint pain, fatigue, brain fog, fever, swollen lymphnodes, rashes and lung issues and my own thoughts. You have no clue how many times I have heard “well you don’t look sick” or ” your too young”. But in all these years I have learned people don’t think about things like this till it happens to them! So, I am here to help educate.
An invisible illness is a chronic illness, disease, medical condition or a mental health condition that is not noticeable or recognizable just by looking at someone. Some of these conditions can cause debilitating pain, fatigue, cognitive impairments or other symptoms which can significantly impact daily life. Examples of invisible illnesses are:
- Auto Immune disorders – (Rheumatoid Arthritis, Lupus, Multiple Sclerosis, Crohn’s disease, Diabetes – type 1
- Mental Health Disorders – (PTSD – post-traumatic stress disorder), depression, anxiety, bipolar disorder and more
- Nerological Disorders – Chronic migraines, epilepsy, POTS – Postural Orthostatic Tachycardia Syndrome
- Alergies – environmental or food related
- Lyme disease
- Cystic Fibrosis
- Asthma
- Parkinsons Disease
- Ehlers-Danlos syndrome (a connective tissue disorder)
- COPD – chronic obstructive pulmonary disease
- Autism spectrum disorders
- Chronic kidney disease
- Cancer
Challenges of living with Invisible Illness
Living with an invisible illness presents unique challenges for people that are not always apparent to others. These common challenges include:
- Emotional impact: Living with an invisible illness can take a toll on a persons emotional well-being. Coping with chronic pain and fluctuating symptoms and dealing with socital misconceptions can lead to feelings of frustration, depression, anxiety and isolation.
- The strain on personal relationships as others may struggle to understand the limitations and needs of the individual. Friends, partners or family may unintentionally down play the severity of the illness or may be unsure how to support the individual.
- Lack of empthy and understanding. Due to the lack of visible symptoms there is a lack of understnding and empathy from others. People may struggle to understand the severity of the illness and this can lead to feelings of frustration.
- Balancing self-care with societies expectations, individuals with invisible illnesses constantly navigate the challenges of managing thier self needs against societal norms often feeling pressure to feel “normal” or healthy which can lead to exasurbation of symptoms and exhaustion.
Common Misconceptions of Invisible Illnesses
The challenges of living with an Invisible Illness can be a lot. Most of the time they are unpredictable. Frustration, guilt, embarrassment and exhaustion are common feelings. For younger persons the stigma is that well your young, you shouldn’t be sick.
There are many misconceptions associated with Invisible illness
- Resting will make you feel better, this is true for some but also then were lazy.
- It’s all in your head, we wish
- They are lazy. No just disabled
- If someone isnt openly struggling they are faking, truth is most of the time we are faking being well!
- Theres no way shes sick shes always so happy. What other choice is there? Angry?Sad? all the time? No Thanks
- She cant have arthritis “thats an old person disease”. nope
The way we look has nothing to do with the way we feel. We can cope well after years of “dealing” with a chronic illness.
Imagine suffering from one or more of these and having chronic pain every waking moment of every day, fighting to keep your eyes open to work or drive, trying to keep a positive mind set can be challenging. People who look at you have no way of knowing that you’re suffering or that you have a chronic illness. Because there are no visible signs, people may seem unsympathetic and less understanding of the people suffering from these REAL conditions
How do we support people living with invisible illnesses?
So what can we do to support others with Invisible Illnesses? Its important to foster empathy, raise awareness and create supportive environments for individuals with invisible illness. developing a better understanding, providing appropriate accomodations and offering emotional support can significantly improve the quality of life and well-being for those living with invisible illness.
First, lets not jump to conclusions. Understand they might not look ill. Then lets try talking with them, learn about their illness listen to them. Learn about thier specific illness, find out the symptoms, treatments, side effects from treatment and type of limitations they may have. This will help you understand them and you’ll be able to show empathy and compassion toward them this will also help them feel supported and loved. Accept that you are completely powerless to make them better, love and understanding are some of the best medicines. Offer help, saying things like “Let me know if you need help.” People with illnesses often times worry about being a burden on thier family or friends. Look for ways to reach out.
Spend time with them, people suffering these illnesses sometimes self isolate become unsociable or house bound. Having a friend can be one of the best support methods available.
Its important to remember that not all illnesses or disabilities are immediately visible. Promoting understanding, empathy and education is absolutely key to addressing the needs of people with invisible illnesses. Acknowledging that not all health conditions are visible and advocating for a more inclusive and compassionate society that supports them is what it involves.
People struggle to accept what they cant see as real. “seeing is believing.” Not always! The way we look is not always the way we feel.
Raising Awareness
Raising awareness for invisible illness is very important to encourage understanding, empathy and support for individuals living with invisible illness. Here are some ways to raise awareness.
Sharing personal stories: Individuals with invisible illness need to share thier personal experiences and stories via blogs, vlogs, social media even public speaking events. These stories help to humanize the condition increase awareness and provide personal insight to the challenges persons with invisible illness go through in thier daily lives.
Education: Use social media, web sites, community events, phamplets to help spread awareness by educating with up to date information about specific invisible illnesses. Provide resources about these conditions and how to support others affected with these conditions. Colaberate with avocacy orginizations. Partner with them to create awareness campaigns, events and about specific illnesses. Collaberation can help to reach a wider audience and leverage resources and expertise.
It is important to raise awareness, increase understanding, and provide support for individuals with invisible illnesses. Creating a more inclusive and empathetic society can contribute to better healthcare, increased access to accommodations, and enhanced well-being for those living with these conditions.
In conclusion, advocating for invisible illnesses is crucial in raising awareness, breaking stigma, promoting understanding, supporting patient rights, connecting individuals, encouraging research and funding, and empowering those living with invisible illnesses. By advocating for these conditions, we can create a more inclusive and supportive society that recognizes the challenges faced by individuals with invisible illnesses and works towards improving their lives. Together, we can make a difference and ensure that the voices and needs of those with invisible illnesses are heard and recognized.
And above all else BE KIND! You never know what someone is going through!
