Living with chronic illness is HARD especially when many symptoms aren't visible and lab tests don't always confirm a diagnosis or that something is going on.
~90% of disability are invisible - meaning that symptoms are only experienced by the person and there aren’t obvious signs and symptoms visible to the naked eye.
People get tired of people being sick, but what about the person who is actually sick?!
Spoonies will often downplay symptoms since they don’t want to feel like they are constantly complaining. When they say they are ‘fine’ they are still having some degree of discomfort and symptoms, enough to make it difficult to work or be productive, but not enough to warrant a hospitalization.
I got my first glimpse into having an invisible illness after my first back pain flare-up where I literally had to be carried from each room since the pain was so sudden and intense.
The pain eventually was manageable. However, I quickly learned that having a constant, aching pain -- although manageable -- completely DRAINS your energy. This would give me less energy to show up for my kids, have increased irritability, constant exhaustion, guilt for not being the fun mom, anxiety wondering when the pain will just end, depressive feelings from so much being out of my control… the list continues.
I quickly learned that no amount of sleep will improve FATIGUE.
I learned the feelings of isolation and helplessness.
I felt the mom guilt and feelings of inadequacy.
I learned how flare-ups aren’t always preventable, even when doing everything right.
Most importantly, I learned it was ok to ask for help.
People living with chronic illness carry a major psychological burden since the disorder can be characterized by unpredictable flare ups, meaning you can be fine one second and a mess the next. Plus there is the added stress of having to prove something is wrong to others which ultimately worsens (or triggers) a flare-up.
Patients just want to be heard and listened to. The same applies to our loved ones – whether family or close friends.
Believe your friends living with chronic illness. Show your support and show up with compassion. Read below for some ways to support someone with chronic illness!
Supporting Someone with Chronic Illness
Things to Understand about Chronic Illness
- Flare-ups are unpredictable, plans may be cancelled last minute
- Be understanding if it takes longer to respond to messages/calls
- Don’t stop inviting a person even if there’s a high chance they won’t come
- Listen to them and validate their feelings
- Don’t give unsolicited advice
- Offer a hug
Powerful Statements to show support:
- I believe you.
- How can I support you?
- I’m listening, what can I do to help?
- Thanks for sharing that with me.
- I love you and I am here for you.
Maya Bloomberg, APRN