What’s an invisible illness and how to support those who have it

An invisible illness is something that you can’t necessarily see on the outside.

Examples of invisible illnesses include:

  • Autoimmune diseases such as Crohn’s disease, Lupus

  • Chronic Fatigue,

  • Depression, Anxiety and other mental health illnesses

  • Fibromyalgia

  • Migraines

  • Diabetes

  • and more.

A common misconception of invisible illness ⇥ Good days = cured! Right?

Symptoms such as chronic pain, brain fog and ongoing fatigue are commonly associated with an invisible illness. This means that someone on the outside can ‘look’ healthy, but if you spend enough time with them, there’s a lot bubbling under the surface.

As someone who was diagnosed with Rheumatoid Arthritis at age 7 and Lupus at 20, I have consistently been told my whole life that “you don’t look that sick”. I even had a lady tell me on the train that I was being ‘selfish’ for sitting down and using a seat.
Little did they know that I was barely holding it together, dealing with chronic pain and fatigue that they couldn’t see.

To complicate matters many chronic conditions tend to ebb and flow in severity. Some days go really well and on other days it’s difficult to work or even just function on a basic level.

This can be confusing for someone on the outside to understand. There’s an assumption that if someone with a chronic illness is enjoying themselves, they must be ok. You can see them laughing or participating in activities in which they seem symptom-free. So they’re cured, right?

But in addition to having ‘good days’, many people have learnt to cope with their symptoms or unknowingly to others, have rested for days before to store up enough energy to participate.

→ Ways you can support someone with an invisible illness

  • Listen rather than give unwarranted advice - if I had a dollar for every time I’ve had a flair-up and someone has told me to take magnesium or just to ‘get more sleep’, I would be richhhhhh baby. Although advice can be helpful, it’s important to wait until you’re asked.

  • Take time to talk to learn about their illness. You don’t need to read medical studies, but a simple Google search goes a long way. Start a dialogue with them and ask questions about symptoms, treatments and how they would like to be supported.

  • Check-in on them and don’t take it personally if they don’t respond straight away. When someone is going through a flair-up or dealing with their invisible illness, staying home all the time can be incredibly lonely and isolating. Reaching out, checking-in and organising a time to catch up, can really help for the person to feel loved and not forgotten.

  • Be patient and try not to get frustrated. The thing with invisible illnesses are that symptoms don’t go away. There can be cycles where it feels like the person is suddenly getting better, and then bam!, they’re back to bedrest and fatigue. Although this can be challenging to deal with, it’s important to remember that the person didn’t choose this and they’re at the whim of the illness.

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