Lessons We Can Learn from People with Invisible Disabilities
By Drew Bufalini
Approximately 96% of people who live with a disability have an illness that is not visually discernable (2002 US Census Bureau). They do not use wheelchairs, canes, oxygen or any obvious assistive devices. For all intents and purposes, they appear healthy. Yet, they are far from it.
Some examples of these invisible disabilities include: #traumatic brain injuries, fibromyalgia, Crohn’s disease, bipolar disorder, chronic pain, PTSD, chronic sleep disorders and many other painful, inveterate illnesses.
These chronic diseases, syndromes and as-yet undiagnosed, life-changing afflictions wear a mask of normalcy that belies the truth. People living with invisible disabilities suffer more than severe health problems – they must also deal with disbelief and misunderstanding from loved ones and the general public. “They are forced to battle for respect and understanding while mourning their loss of ability and freedom; often while others accuse them of being lazy or malingering.” (InvisibleDisabilities.org)
Nevertheless, the invisibly disabled are quite real and facing the world against the odds. What can we learn from these people who face their challenges and challengers head-on in an effort to live a meaningful and fulfilling life?
1.Disability and happiness are not mutually exclusive. Disability cannot steal happiness. Only a negative attitude can do that. Of course, there is a grieving period for the “healthy self” that has been lost. But once acceptance is achieved (through therapy, medication, prayer, meditation or other means), happiness again becomes possible. Anyone can learn to find the joy in life that transcends disability. Or, for that matter, any other problem.
2.Communication is courage. Suffering in silence has its place, but maintaining healthy relationships with friends and loved ones means honesty. While illness is a very personal experience, the people who care about you want to help. Turning their help away may give the briefest feeling of self-righteous independence…but accepting it or even asking for help doesn't make you any less independent. Communication facilitates a connection and an understanding between you, those who care about you and the community at large. We should all have the courage to communicate honestly – both to keep our loved ones close and our consciences clear.
3.Kindness is a two way street. While helping others can certainly provide a boost to the ego and even a “helper’s high,” the ability to accept help yourself is both a lesson in humility and an inside look at how others may feel when you help them. Using this knowledge to adapt your behavior when helping others is true sympathetic kindness. Share your positive feelings and kindness with others and, more often than not, it will be reciprocated when you need it most.
4. Know yourself. Anyone with a disability knows their limits – whether they can only stand for ten minutes per hour, eat a specific diet or must stay close to a restroom – living within these limits without allowing them to become limiting is an art. Understanding yourself gives you the opportunity to fine tune your life and play to your strengths while cultivating new ones.
5.Learn to tolerate, if not accept, other people. People with invisible disabilities face discrimination every day – from their doctors, insurance companies, families, employers and even strangers who feel compelled to label them “healthy” without any real knowledge. They are forced to tolerate this discrimination even while being judged. If the invisibly disabled can tolerate those who discriminate against them, it’s because they’ve learned to practice what civil rights leaders have espoused for years: everyone deserves tolerance. Even the ignorant. Extending this practice can only have positive results in your life.
6. Be grateful for every moment – both the good and the bad. Make the good times count and be thankful for them. Learn from the bad moments and leverage them to make yourself stronger. Beyond helping you have a higher level of positive emotions, practicing gratitude can also lead to lower blood pressure and a stronger immune system. (http://greatergood.berkeley.edu/expandinggratitude)
7.Inspiration Is Everywhere. Find Yours. Author Jack London was once quoted as saying, “You can’t wait for inspiration. You have to go after it with a club.” Disabilities – visible and invisible – can make getting out of bed to face the day a daunting challenge. Inspiration may lead to purpose, which can motivate you for the rest of your life. Whether you’re inspired by the sunrise, the smell of breakfast or your children - finding these “little” inspirations can make a significant difference in your life.
8.Enjoy the Mysteries In Life. Appreciating what you do not understand can seem difficult at first. But do you need to know the moon’s gravity to appreciate its fullness in a cloudless midnight sky? “This is the greatest damn thing about the universe. That we can know so much, recognize so much, dissect, do everything, and we can’t grasp it.” - Henry Miller (http://www.brainpickings.org/2013/03/21/henry-miller-meaning-of-life/)
9.Life Is Short and Capricious. Live Without Regrets. There is no time like the present to correct mistakes, tell someone how you feel, forgive a grudge, open yourself up to a new relationship, act on a long withheld, positive impulse and the million other things you may consider doing. No one wants to look back at their lives and feel they missed an opportunity that could have been life-changing. Take a chance.
10.Forgive and Forget. Rationale: see above.
11. Develop a Support Network. Support groups exist for just about every disability imaginable. They provide a judgement-free zone for people with similar disabilities to share a cathartic vent session and learn new techniques to help overcome various issues. Whether you’re a mom with a special needs child or a college kid with an unruly puppy – the internet has more than a few places to find people in similar situations to share their knowledge, experience and compassion with you. These can become connections that last a lifetime.
12. Saying “No” to Others Is Only as Difficult as You Make It. People with disabilities become people pleasers because they already feel they are disappointing their loved ones by having a disability. This tendency can cause them to lose focus on their own needs and suffer disproportionately as a result. Consequently, simply deciding on an invitation can turn into an agony of self-delusion, second-guessing and misery. Or it can be as simple as knowing yourself and RSVPing one way or the other.
13.Never Stop Fighting. Whether it’s for a correct diagnosis, a good cause or simply to get through the day without giving in to your pain or symptoms – the fight makes us stronger and teaches us how to keep winning our daily battles. Sometimes no matter how much we put into it, we still lose. This is the time to take pride in the fact that you made the effort and know that you’ll live to fight another day.
14. Adapt or Suffer the Consequences. Everyone has heard Albert Einstein’s definition of insanity: doing the same thing over and over again and expecting different results. As your life changes for better or worse, you have the opportunity to redefine yourself as a person who can build on experiences by adapting and forming new, game-changing habits and a happier life. The alternative is, simply put, suffering and insanity.
15.Sometimes Hope Is All You Need. When it feels like the deck of life is stacked against you, remember that tomorrow is always another day. With any luck, a better one. Hope can also translate into effort when you make the decision to turn your hope into reality. Start by opening your mind to the possibilities.
16.Laughter May Not Always be the Best Medicine…But It Sure Helps! Maintaining a sense of humor in the face of any adversity…regardless of how idiosyncratic your sense of humor. Here’s a bit of silly to get you started: “My insurance company refused to pay for my newborn son’s circumcision. Their rationale? “Unable to locate member.” (http://www.rd.com/jokes/funny/medical-care/insurance-policy-joke/)
Another often quoted gem of Einstein’s says that “When we stop learning, we start dying.” Therefore, we must recognize all that the world and its wild diversity of people, culture, philosophy, technology and even politics has something to teach every one of us – whether we have a disability, invisible disability or are as healthy as a thoroughbred on race day.
About the Authors:
Dr. Bryan Weinstein, D.O. Dr. Weinstein received both his undergraduate and Osteopathic Medical Degree at Michigan State University. He attended the residency programs of Detroit Psychiatric Institute and Wayne State University and received a mini fellowship in electroconvulsive therapy at Duke University. Dr. Weinstein owns two private psychiatric clinics and Life Skills Village, a behaviorally-based neuro rehab treatment center.
Drew Bufalini Drew has lived with several invisible disabilities for going on ten years. Before returning to work after a health-enforced hiatus, Drew ran the chronic pain support group at Crittenton Hospital in Rochester, MI. After several years of effort, education, trial and error, Drew joined Life Skills Village as a volunteer to build up his endurance. Almost four years later, he works full-time at LSV as the Chief Marketing Officer.