EMPOWER THE 10% OF YOUR LOVED ONES LIVING WITH INVISIBLE ILLNESS
Updated: Feb 23
It's estimated that 1 in 10 people live with an invisible illness - a chronic physical or mental condition which can't be seen. In addition to the direct pain these illnesses cause for the individual experiencing them, they can also have adverse effects on one's ability to work, socialise or more.
By their very nature, they are not visible to the naked eye, and can often cause misperception about the person's motivations, causing them to be perceived as weak, lazy or antisocial.
In order to change this cycle, we need to break the stigma associated with invisible illnesses. How do we do that? We speak up. We normalise them. We tell the truth.
So here goes. I'm one of those people.
Ten years ago, I was diagnosed with Ulcerative Colitis, one such invisible illness. Not to be confused with IBS, this is an at times debilitating auto immune disease which has required 10 years of medication, annual colonoscopies and may well one day require surgery. It has been the main focus of my life in times of relapse, and something I've ignored during times of remission. But it's always going to be a part of me.
We talk a lot about diversity, inclusion and belonging these days and I think it's really important that we are inclusive of what that means for people with disabilities - of which most chronic illnesses are classified - and especially those which can't be seen.
Now, because you can't see them, people with invisible illnesses have to feel comfortable sharing their experiences with you. I can't speak for all invisible illnesses, but there are a few things I've learned over the years that I hope others can embrace.
So read on for some simple steps you can take in your daily life to make these people feel seen, heard and comfortable opening up.
1. Give your friends the benefit of the doubt - they may be battling things you can't see.
The symptoms of chronic illness can often be managed but not controlled. There have been so many times where I make plans, only to find that I'm incapable of leaving the house the day of. So I have to cancel at the last minute. And sometimes the same person gets cancelled on time and time again.
Rather than ask if I’m ok, people have assumed I've blown them off and ghosted our relationship. If you see a friend consistently cancelling on you, take the time to check if they are ok and if you can help them. It may be the conversation that helps them open up to you.
2. Don't see hoof prints and assume zebras.
A lot of invisible illnesses have side effects that are consistent with other diseases which are more common. For instance, when I'm in a severe flare, I can't eat without having to run to the bathroom after a meal and immediately use the toilet. In addition, I'll easily lose 20kg in a 4 week period because my body can't retain nutrients. To a typical person, this may send alarm bells of an eating disorder, but it's actually inflammatory bowel disease.
The symptoms deserve your attention, but the root cause may be very different, so open up a conversation before volunteering treatment plans or diagnoses.
3. Ask questions and do your own research.
If someone close to you opens up about their illness, take the time to look into it outside of your conversations with them. Sometimes the symptoms or side effects of one's illness are difficult to talk about and we may not want to say them out loud. But it will mean the world to us to know that you've found them out on your own.
For instance, in any initial conversation about my UC, I often say I have a "gut illness" but won't mention how this plays out in my daily life. The reality of my flares is 40+ urgent trips to the bathroom a day for diarrhea, sometimes not making it in time and accidents happening. But who wants to have that conversation with their boss or romantic partner? Not me. So trust me when I say that it means so much when I can tell someone understands my symptoms without me having to go into the nitty gritty of them.
4. Where possible, proactively accommodate their needs in an inclusive manner.
Inclusivity is one of those words that we've all heard but probably don't know how to apply in every aspect of our lives. But to me, it's the difference between you making an exception for someone, versus making their reality the norm.
My niece has Celiac disease and her family go out of their way to ensure that holiday meals, birthday parties and special occasions only have food available that she can eat, rather than giving her a different meal from the rest of the family. Both would be accommodating her needs, but doing this makes her able to live life just like her brother and be fully included in the celebrations.
I can tell you first-hand how amazing it is when I go to a friend's house for dinner and they've asked about my (very extensive) dietary restrictions and ensured an entire meal for everyone that I can also eat. It's especially meaningful when there's no explanation required and I don't have to open up about my illness to the others at the party if I don't want to.
This is by no means meant to be an exhaustive list, rather a starting point for you to begin opening the door for these conversations. If you, or anyone you know, has an invisible illness, please feel free to leave additional tips in the comments.