After a disabling condition sets in, life changes in unanticipated ways. Self identity, a feeling of no belonging in the world, bad behavior by others and feelings of helplessness set in. Disability can be temporary, long term, sudden or permanent after a long period of decline. Pain, depression and the low maintenance life are a part of the transition to disability. A survivor gets the best possible solution to each of these challenges.
Many times, we say "But you look so good!" when a person says that they have a serious medical condition or are in chronic pain. Such dismissive words make some disabled people feel good. However, dismissive statements can block critical information that a person has a serious medical condition.
Dismissive statements can be backhanded accusations of faking or or avoiding work. Friends and family can resent a disabled person who is no longer available to meet their wants and needs. In the end, the person is still disabled and capacities are still limited, no matter how "good" they look.
Many physical disabilities are hidden from view but they will kill us early anyway. Emotional problems that accompany physical disabilities carry a stigma that lingers long after the scars have healed and the person can return to a more active, but limited lifestyle. Pains are not visible. Life threatening internal conditions are not visible. It is scary to live in a world where people are tone deaf to a person's real condition, especially when the doctor is the one who is tone deaf.
Disability means transition from carrying the ball to having the ball carried. Sometimes it means playing the game of life without a ball. Income goes down. There is no way to pay for favorite entertainment and activities. A sick person must stop doing as much as they used to and to rest.
The person can no longer accommodate the demands of the world or of other people. The reverse happens. People need to understand and accommodate the disabled person.
It is especially hard for formerly active, in-control and independent people who need assistance or who must stop doing what they love to do. It is awful for a parent with children still at home. It is awful for a child who cares for an elderly parent.
It is not easy to redefine one's purpose and place in the world when a permanent disability makes work or getting around an impossibility.
Disability comes with instructions to rest, ask for help, get others to understand, and more. Carrying out those instructions is not an easy proposition, especially when a person was active and in control before the onset.
The Surgeon General has something to say about disability.
The good news is that life does not end with disability. New life begins with the change. Doors close, but new doors open and it becomes possible to live a life of freedom, new goals and even joy.
Pain management is an important part of many disabling conditions. Finding the right combination of pain killers to make life livable without turning into a zombie or addict can be a daunting process.
Live has to be rescheduled because the pain can't be rescheduled. Debilitating painkillers prevent a person from living a full life. Too little pain management leads to a distracted life and possibly worsening conditions. The most important job is to work with the doctor.
Try to get a good space in controlling as much pain as possible with as little damage as possible. This means tolerating minor pains and using exercise, diet and other methods to control issues that trigger or aggravate pain.
Learning to rest, to reduce the demands on oneself and to establish a positive and satisfied new identity goes a long way to reducing the conflict and stress that aggravates or causes pain. If needed, seek counseling and talk therapy for help with transitioning into permanent disability.
Pain causes depression. Depression does not cause pain. This was pseudoscience designed to keep the drug industries happy. Do not stop until you find a physical cause for the pain. It can be arthritis or it can be a rare disorder, but argue this to the end.
Depression comes in different forms, has different causes, and is for different reasons. Some theories about depression link the disorder to the body's reactions to toxins. Today's foods and environments are minefields of toxins and our bodies are good at developing allergies and reactions.
This requires changing the way we deal with foods and in our environments. The classic symptoms of depression include wanting to rest, stay inside, and avoid food or stress. These reactions can actually help a person who has stress, allergies or toxicity issues.
Other forms of depression are based on temporary situations. Losing income, a loved one, a career, one's standing in life, or independence can be helped with talk therapy, exercise, and pain medications. It helps to find alternative work, hobbies or new, healthy passions in life that accommodate the disability.
The most severe depressions are disabling conditions in themselves. These forms of depression require a serious and ongoing regimen of medical care, drug therapy, physical therapy and support.
Fighting hard to keep up with the therapies is the first and most important job that a disabled person can do. When help is needed, the most important job is to ask for and use that help. If retraining is required, then there is plenty of help for setting new career goals. Perhaps it is time to write that great American novel or to paint that masterpiece. There are valuable things to do for the community and for the self.
Sometimes, there is clearly a disability, but no doctor can make a diagnosis. Fighting hard for answers is the most important job that a disabled person can do. These hidden illnesses can cause depression that seems to come from nowhere.
Rare conditions and genetic disorders can cause depression: Hidden illnesses can explain a lifetime of having to work harder at things than other people, but they can go undetected or diagnosed because they are so rare. It is important to keep track of symptoms, to tell the doctor everything and to not stop until the source of the problems is tracked down.
It is very important to get complete medical workups and evaluations, to record any and all symptoms and to tell the doctor the truth about physical and emotional feelings. This helps the doctor to research similar symptoms and feelings that other patients have had. Knowing how you fit into the statistical whole helps to decide whether medical tests or specialists are needed.
Living a low maintenance life
Another process in adjusting to disability is to make a place in the world that does not need so much high maintenance. It is amazing how a stress free life can open the heart and mind to new, less ambitious and less demanding lifestyles.
Enjoying simple pleasures, trying out satisfying new hobbies and activities, and doing things that have been put off are ways to find new opportunities and joys.
Counseling for the self and the loved ones. Dysfunctional people and dysfunctional relationships must be dealt with, especially when sudden and catastrophic disability sets in. Individual and family counseling, finding new friends and other life changing actions are part of the process. There is no excuse for tolerating abuse, so work toward a life of basic respect and treatment with dignity and compassion.
Counseling also helps to find new careers and activities. A good counselor can refer the patient to any number of vocational and physical rehabilitation and other programs that help to transition into new and satisfying directions in life.
Life does not end with disability. New passions, pursuits and joys are there to be discovered. Do not give up and do not give in.