Hidden Battles, Silent Struggles
This weekend marks the official start of summer. It’s my favorite time of year. I spent my childhood summers in a rented house in a small beach town in R.I. with my family and extended relatives. It was idyllic for many reasons. Most of all, those memories remind me that simple pleasures are the basis of a joyful life.
Do you know what you need to live a joyful life?
I look forward to the sun, sand, ocean, and spending time with my loved ones. The summer season is short here, and there is no time to waste!
As a reminder, in honor of Lyme Disease Awareness Week through June 2nd, an annual subscription to The Power of Change has been discounted to just $39.00. For each new paid subscription, 50% will be donated to the Global Lyme Alliance. If you’ve been a free subscriber and enjoy reading each week, please consider becoming a paid subscriber.
I’ll be back next week with a new article.
Until then, I’m sharing an article I wrote about a more serious topic: invisible illnesses. This article was written during Invisible Disabilities Week last year. Still, it’s relevant any time of year, and I was reminded of its importance this past week while I attended a seminar that discussed the impact of invisible illnesses. While I’ve dealt with an invisible illness and disability for more than half of my life, I’ve developed tools to navigate the many difficulties inherent in such illness, but millions of people have not. Many suffer hidden battles and keep their struggle silent.
Hidden Battles, Silent Struggles
According to the World Health Organization, an estimated 1.3 billion people – or 16% of the global population – experience a significant disability today.
In the U.S., 61 million adults have a disability. The CDC notes approximately 10% are invisible.
Persons with disabilities are diverse: young, old, male, and female. They come from a wide range of ethnic and religious backgrounds. They live in cities and rural communities.
Illness and disability do not discriminate.
Have you ever considered that disability is unique - it’s the only minority group a person can join at any time in their life?
If you’ve never experienced disability, you’re lucky, but I ask you to consider what you’d do if it happened to you.
Not everything is what it seems.
While some disabilities are obvious to others, many people live with conditions that are not outwardly apparent. They may look non-disabled and even healthy to some. As a result, they’re often criticized about their disability status by family, friends, coworkers, and the community in which they live. For many, the fear of contempt stops them from talking about their disability.
The stigma is real.
Invisible disabilities can drastically affect how a person functions.
Dyslexia, for example, involves a person’s ability to read and understand printed letters and words. It makes schooling and working difficult.
Many autoimmune conditions cause daily fatigue and pain, but you wouldn’t know by someone’s appearance.
For twenty-five years, I was silent about my invisible chronic illness. I had been disbelieved by dozens of doctors, family members, and friends. I was questioned about my symptoms, and it was suggested that my illness existed only in my mind.
As a young adult in my mid-20s, I didn’t have the life experience to understand that my illness was very real despite a lack of acknowledgment from the medical community. There was nothing I did to cause it. It wasn’t my fault that the medical establishment was ill-equipped to diagnose and treat my condition.
For years, I struggled with the stigma of my illness and disability.
At each appointment, I was told I looked fine. The assumption was if I looked fine, I must be fine.
I wasn’t fine.
Hidden Battles
Every day, we encounter individuals who appear perfectly healthy but grapple with many symptoms, challenges, and limitations.
Chances are you know someone with an invisible illness, whether physical, mental, or both—a friend, partner, colleague, or employer.
From diabetes to Chron’s disease, autism to anxiety, invisible illnesses surround us. For many, the cause is determined, and treatment begins, but the symptoms remain. For others, the reason is a mystery; treatment is illusive, and the symptoms worsen. In either case, the illness and the subsequent disability remain invisible to most.
The underlying cause of my illness would take two decades to uncover. Not being believed and questioned about the validity of my illness took its toll.
I stopped talking about my illness and symptoms.
I became isolated from family and friends.
I lost touch with former colleagues.
I lost faith in the medical system.
I became invisible.
People with disabilities face many health inequities, including stigma, discrimination, exclusion from education and employment, and barriers in the health system.
Social insensitivity is endemic to people with invisible disabilities, often because they lack an unmistakable symbol of their condition.
“Disability” typically evokes images of wheelchairs, ramps, and grab bars. But millions of people have disabilities that aren’t helped by a mobility device or a designated parking spot.
Wayne Connell founded the Invisible Disabilities Association in 1996 after his wife was diagnosed with multiple sclerosis and late Lyme disease. He was frustrated by the outside perception that she didn’t have a real illness.
Whether an illness or disability is visible or not, similarities exist.
In both cases, symptoms can ebb and flow.
People can have “good” days and “bad” days.
Invisible disabilities, such as anxiety or depression, may cause more problems in some settings and less in others.
Author and clinical psychologist Andrew Solomon, in an N.Y. Times article about Invisible Disabilities, noted:
“We don’t question whether people with profound mobility challenges can run down the corridor to get the door; we don’t ask people on crutches to participate in a dance (though some people who use them can do so). But what are we to make of someone who has to be insulated from extreme stress because she has epileptic seizures? What do we do with someone whose clinical depression prevents him from working efficiently on bad days?
Students granted extra time to take a test may be met by the cynicism of peers; some may choose not to avail themselves of a reasonable accommodation because they fear being stigmatized. Working people who require specific environmental conditions — an autistic person, for example, may need an office without florescent lighting — may attract suspicion and even mockery.”
In honor of all those who suffer with an Invisible Illness, I ask you to consider the following:
People with an illness or disability - readily seen or not- deserve support and respect.
They deserve understanding.
They deserve kindness.
How else can you help?
Friends, Family, & Partners:
Listen and be supportive. Remember that your loved one is experiencing something they cannot control. Ask what they need, and be open to learning about their condition.
Employers & Colleagues:
You never know what your coworkers are going through. Be aware of the language you use at work. Not everyone with an invisible illness feels comfortable disclosing their diagnosis. If you’re a supervisor or in human resources, be open to hearing what an employee may need and do your best not to view their diagnosis as a weakness.
Educators:
Consider your students’ health needs. If someone misses a class or asks for extensions, don’t assume they’re avoiding work. There may be more to it than meets the eye. Have a conversation with the student or their parent to learn more.
Healthcare Providers:
Listen to your patients. Believe your patients.
People with invisible illnesses have probably been dealing with their conditions for a long time. They know their bodies, what’s worked and what hasn’t. Try partnering with your patient and combining your expertise to find solutions. If you don’t know how to help, try finding someone who can.
Patients with Invisible Illnesses:
As difficult as it can be, remember that your identity is much more than your diagnosis.
Be your own advocate or find an advocate if you cannot fill this role.
Remember that stigma develops slowly over time and is not easily reversed.
Be patient with people as they learn. If they’re unwilling to learn, cut your losses.
Find those who will support you and seek others in a similar situation. Surrounding yourself with those who care is the difference between being seen and being invisible.
Until next week, be mindful and stay safe.
Tracy xo
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