Faces of invisible pain
Have you ever watched a person pull into a handicap space, open the door and walk away appearing as if nothing is wrong with them?
You may even say something to yourself like “ They don’t look handicapped? “ or "What's wrong with them?"
Hopefully this is an internal dialogue because the truth of the matter is many disabilities are not visible to the naked eye.
In fact over 125 million Americans suffer from a myriad of silent chronic conditions ranging from LYME, Rheumatoid Arthritis, Endometriosis, MS, to mental illness.
If you think about it most of us judge health based on physical appearance which is not only an inaccurate way to assess health but incredibly tough for the ailing to convey their pain when their isn’t a visual cue to give onlookers insight into their struggle.
Trust me. I have spent the last 4 years trying to explain my pain to the people around me. They see a smiling youthful face and they often say comments such as “ you look too pretty to be in pain” or “ how could you be in that much pain and still smile?” This can be really hard to hear when inside you are screaming but doing your best to at least pretend you are not. Most people living in chronic pain have pretty strong defense mechanisms for this sort of misunderstandings and generally keep their pain to themselves as not to alienate the people around them. Not only does this create an automatic separation from the people around you or the “non suffer’s” but it also continues the cycle for observers to not really connect to the one suffering and keep silent diseases in the dark.
The life of someone living with a chronic pain/illness generally looks like this:
Disrupted sleep patterns and overall exhaustion.
Painful, stiff mornings which sometimes take hours to push through.
Cloudy mind from pain, medications, and/or sleep deprivation.
Every day actions like making breakfast or taking a shower can take double the time or just don’t get done due to pain or lack of energy.
Each day bleeds into the next with the only distinguishing difference being the copious trips to the hospital, doctor visits, and if you are lucky enough, desperate attempts at acupuncture, massage, and alternative pain therapies.
A never-ending cycle of flair ups, pain, exhaustion, and isolation.
To share my truth on the subject I struggle with not wanting to speak up about the pain I am in everyday because inside I’m afraid of becoming a burden for bringing misery into the lives around me. The fact of the matter is many people have left me. Many people in my life have disappeared after things just didn’t improve fast enough. Sure people do obligatory phone calls every month or 2 but in general it can be a lonely existence to live in pain everyday or not be able to participate in life like a “normal” person would.
The reframe to all of this is that you find out really quick who your real friends are when you are sick or injured for an extended period of time. It is also a great lesson of humility to be forced to rely on others for basic needs like food shopping or help with bathing. These moments change you and the people that stick it out with you are bonds that will last a lifetime.
I started a campaign on Instagram called the #RealFacesofInvisiblePain where I feature different warriors who are fighting silent diseases. It has been an eye opening experience to say the least. The purpose of this blog post and the campaign is to expose healthy, happy people to the truth that hides behind many silent warriors faces. I would encourage you to show more compassion when people share their diseases and injuries with you. LYME, Endometriosis, Crohnes, Rheumatoid Arthritis , MS whatever it may be is an opportunity to ask real questions and find out more about the person behind the disease and allow them a moment to feel heard. Put your selves in their shoes for a moment and imagine if you couldn’t work out anymore, eat many of your favorite foods because of health reasons, or imagine trying to hold down a relationship when you can’t walk or leave your bed. Just because we are sick, in pain, or dealing with a chronic disease doesn’t mean we aren’t the same people with the same needs as everyone else; the need for variety, the need to feel important, and the need to be loved. Judging someone for their health is just as bad as judging someone for their skin color. Open your mind and let someone in pain into your life, I promise it will be the most rewarding experience you will ever have.
With that in mind I will leave you with the story of one entry I recently received that is a true example of what a silent disease can really look like:
Meet Carrie. A vibrant young mother of 2 battling MS
“I don't look sick, maybe at that exact moment I didn't even feel sick, I don't remember. My memory isn't what it once was, my cognitive functioning, the firing of neurons, isn't what I it used to be.
I have Multiple Sclerosis. I believe I had my first 'relapse' at 25. So young, in a foreign developing country with my husband and my right arm when numb. It was difficult to lift, felt like a heavy weight. The neurologist agreed there was decreased sensation and activity, after sticking needle after needle into my right arm. Don't worry I didn't feel it. I recovered and went on until returning to the states and having my second daughter. I did not and do not look sick, never really have.... yet my right arm and leg still went completely numb. I thought I pinched a nerve as I was coaching basketball for fun and to get back in shape. A young resident recommended an MRI... I thought nothing of it until I received a phone call telling me I had MS. I was 30 years old with a newborn, a four year old, a husband who refused to understand, and a completely numb right side of my body... 2007, a year I will never forget for the amazing growth of my daughters and devastating news of my chronic illness. Yet, don't forget the most common response, "you don't look sick!"
I know. Thankfully, I suppose, I don't look sick, but I feel it every moment of every day. I fight myself every single morning when the alarm awakens me. I fight to get out of bed, to get my girls ready for school. I fight the government for the rights I deserve by spending years in the workforce paying for exactly the type of people I have become...disabled... I hate to even write the term. I refuse to give up. I have no choice, I cannot give up, and the government has denied my reality already twice. I don't look sick.... I suffer from severe fatigue, depression (who wouldn't), and the loss of a ten-year marriage because my ex-husband couldn't 'handle' a chronic illness. Numbness, tingling, dropped steps, a general lack of cooperation between my body and my brain, balance issues to name just a few. BUT!!!! I fight on! I drag myself to the coffee pot in the morning. I wake my daughters and help them ready themselves for school... my cognitive abilities aren't what they once were, but by daughters and close friends know not to take offense when I call one 'what's her face'. I have simply forgotten for a short moment.
Please know I am neither alone nor nearly as disabled as many. I fight on and I succeed and have successes any many of the small things. I maintain and fight if not for myself than for my daughters, but man am I tired! I have learned not to discount anyone’s battles or inner fight. The fight is real.”