People living with chronic conditions like Lyme Disease and other environmental illnesses encounter their share of loud, unsolicited opinions about their health status from others.
They contend with sweeping statements from bystanders about what it must be like to be really sick from these chronic illnesses, even though said bystanders have never suffered from those particular illnesses themselves.They are often told what they should and shouldn’t be doing in regards to their health and how they should look, feel and need to behave, even though no one else has ever walked in their shoes.
So when comedians Sara and Erin Foster decided to publicly weigh in on the health legitimacy and personal choices of Lyme Disease sufferer, and past cast member of The Real Housewives of Beverly Hills, Yolanda Hadid, well I decided to pay attention to that.
Speaking on SiriusXM’s Dirty, Sexy, Funny with Jenny McCarthy to promote their new television show Barely Famous, the comedian sisters announced...
“We don’t comment on Yolanda’s health, but what I will say, is if you’re capable of continuing to be on a reality show, you’re not dying,” said Sara who, as she mentioned, doesn’t comment on Yolanda’s health but then, you guessed it, commented anyway.
Erin then added “...If anyone’s ever known someone who is very sick, has cancer or is dying, is in the last year of their life, the only thing that person gives a shit about is getting through the day. No one wants everyone to know how sick they are...”
Media sound bites like these certainly make headlines. And let’s face it, often misunderstood conditions like Lyme Disease and other environmental illnesses certainly need all the help they can muster in raising social awareness. But unfortunately, all publicity isn’t always good publicity.
Not only do these remarks feed into the persistent and devastating invalidation already encountered by sufferers, they publicly minimize the seriousnesses of these life-altering conditions which affect millions of people world wide today. In addition, they dangerously perpetuate an even greater misconception too. That living with an acute, chronic or life threatening illness means that you should only look and behave in certain illness-acceptable ways. Those definitions being established by healthy onlookers. And furthermore, if you, as a sick person, are not conforming to those stereotypical definitions and perceptions of illness, well then the only logical explanation is that you must be faking the whole thing.
Can the all-knowing bystanders of this world please stop talking now? Because all of us, who like Yolanda Hadid are actually living with these illnesses, have had enough of their misinformed views.
Serious illness is a completely game changing experience. I know this because I have lived it firsthand. Everything you ever thought was true is no longer. What you thought was possible for you and your life becomes totally rewritten. Your entire belief system, all your relationships, your sense of self... everything looks completely different.
You have to learn to be braver than you ever thought you could be. You have to dig deep and find your inner strength many times over. You must face lessons of loss, mortality, discrimination and catastrophic circumstances beyond your control.
Complex, multi system environmental illnesses like Lyme Disease and others don’t play by the same diagnoses and treatment rules as other more commonly understood conditions do.
Being sick doesn’t make you void of hopes and dreams. It doesn’t make you less interesting, less intelligent, less curious or any less of a human being.
Sometimes, these illnesses take months, years and decades to diagnose. Sometimes, they look like wheelchairs, bedpans and feeding tubes. Sometimes, there are no outwardly visible signs at all and sometimes, a unique and unlikely combination of the two.
It’s an incredibly trying experience to go through and it’s difficult to explain to those around you exactly how it feels. Tough times and a lack of understanding can impact on your relationships with others irrevocably. Friends and family members you have treasured your entire life may disappear from sight. People who pledged allegiance to you through thick and thin, good times and bad, and ‘til death do you part, now point fingers behind your back.
Repetitive invalidation, harsh critique and ignorant headlines often leads many frustrated sufferers to share their own true to life stories in the media and on other online platforms. Some put on a brave face for onlookers, while others reveal the sometimes grim reality of what these illnesses look like behind closed doors. They do this not for attention, but because they have suffered long enough. They want greater community awareness, they want to educate others an they want to be a voice for those who have none.
When I decided to put my own face in the media to help raise awareness for environmental illnesses, some people told me that I didn’t look sick enough.
Little did they know, it took me days to prepare, energy-wise, for that one photo and weeks to recover. I was wearing skinny jeans and curled my eye lashes and chose to smile in front of the camera. But some bystanders told me that sick people shouldn’t do things like that.
Another person said my photos on Instagram looked too “nice” so my years of ill-health must have been all made up. And another concluded that, because they hadn’t heard of my condition before, it couldn’t be true.
The actual reality is that things are rarely as they seem. You can be fighting the health crisis of your life and still feel like cracking a smile once in a while. You can be dealing with the most challenging and heartbreaking of circumstances and some people may still not believe you. You may even be bedridden or in your final days and you still want to have some fun. Still crave so badly to feel alive.
Sick people are allowed to be happy. They’re also allowed to curl their eyelashes, grin in photographs, and film reality TV shows if that’s what makes them feel good, too.
Being sick doesn’t make you void of hopes and dreams. It doesn’t make you less interesting, less intelligent, less curious or any less of a human being. Sickness is not who you are, but the circumstances that you find yourself in.
Sick people are allowed to be happy. They are allowed to ask for what they need or dress up in high heels if they want to. They’re also allowed to curl their eyelashes, grin in photographs, and film reality TV shows if that’s what makes them feel good, too.
Serious illness is different for everyone. No one can prepare you for it. No two people approach it or respond to it in the same way. And because environmental illnesses like Lyme Disease and others are unlike anything we have encountered before in the past, comparisons, preconceptions and sweeping know-it-all statements aren’t helpful in the slightest.
It’s easy to sit safely on the sidelines and shout commentary at the players. But unless you have experienced the game firsthand, unless you have waded through the muddy field on your hands and knees with all the odds against you being bombarded by the constant opinions of others. Unless you have done that, you will always be under-equipped to pass judgement on anyone else’s health status an choices.
It’s time to learn from those who really know what it’s like. It’s time to support people on their healing journeys, not ridicule them due to misinformation. Everyone is doing the best that they can, regardless of stereotypes and they only want to live their lives however they see right. So, to every misinformed know-it-all out there, please stop talking now and let’s all just get on with it.
Described by South Australian Style Magazine “as someone to aspire to,” Amelia’s healing journey coupled with her gutsy determination, unstoppable optimism and insightful spin has captured the attention of people all over the Globe.
Along with her popular blog and social media posts, Amelia is currently writing her first book to inspire others to delve deeper into their own life experiences and stay focused on awesome dreams and outcomes no matter what obstacles they face.
Follow her on social media and sign up to her inbox inspo at ameliahill.com.