“I don’t have the life I expected to have,” says Shayla Maas, a disabled woman who was an adolescent psychiatric nurse before her Ehlers-Danlos Syndrome progressed to a point that made it difficult to work. When a series of injuries then left her transitioning to light duty and eventually forced her out of the workplace, it was a total sea change.
According to the U.S. Census, nearly 20 percent of Americans are disabled. Some have congenital disabilities they’ve lived with their whole lives. Others have faced traumatic accidents, diagnoses of chronic conditions, and other life changes — sometimes at the height of a busy career, or while pursuing dreams with tremendous physical demands. A newly-acquired disability — or the diagnosis of a previously unidentified chronic condition — represents a tremendous life change, one that can be very isolating.
Amanda Rausch of Talkspace notes that an acquired disability can be accompanied by a grieving period. Grief isn’t limited to an emotional reaction to the death of a loved one — other kinds of loss can spark intense emotions, including not just sorrow but also fear, rage, anxiety, discomfort in the body, and feelings of alienation.
Learning to cope with this big life change is known in the disability community as the “adjustment period,” and the first thing to understand about it if you’re facing it, or watching a loved one go through it, is that you’re not alone. Many people have been through it before, and along the way, they’ve learned things that will help you.
There’s hope for people with newly-acquired disabilities.
The adjustment period can be challenging on its own, as it involves adapting to accommodate the demands of your body in ways that might feel unfamiliar, or even scary. “I wasn’t excited about needing an ostomy and having to poop in a bag for the rest of my life, but I was looking forward to feeling better and actually getting to participate in my life again,” says Jennifer Brown, who needed an ileostomy to treat complications of Crohn’s disease.
But it can be hard for another reason, too: The social attitudes surrounding disability. It’s not uncommon for non-disabled people to have minimal social contact with disabled people, while being surrounded by media that depicts disability as a tragedy, and a bad thing.
You’re probably used to hearing lines like “she’ll never dance again” or “her crippling depression made it impossible to work.” Or, conversely, you hear the success stories that seem impossible to match, like the Paralympic athletes who compete at the top of their sport, or amputees who summit Everest.
When you suddenly learn that you’re disabled — whether via a somber conversation in your doctor’s office about some test results or when you wake up in a hospital bed and realize something is very, very different — and you have no contact with the disability community, it’s anxiety-producing, and a lot to cope with.
Lacking frame of reference or role models, some people feel very lost, something Maas commented on. “I didn’t connect with the disability community until well after I had adjusted,” says Maas, who noted that she learned a lot of things the hard way, and sometimes developed tricks and shortcuts that were, in the long term, harmful — but she didn’t have any resources to point her in the right direction.
Talk therapy helps newly-disabled people adjust.
David Kaplan, the Chief Professional Officer of the American Counseling Association, says that while the basic medical needs should be taken care of first, getting people into group counseling is critical. With a caveat, he notes: The group should include a mixture of newly-disabled people and others who may be struggling to cope, and those with experience who have gone through the adjustment period and can act as mentors and supportive team members.
Individual counseling can also be tremendously beneficial. Rausch says that helping people come to terms with disability and its role in their lives can be an ongoing process, and includes holding space for what has changed, while looking forward to the future. She encourages her clients to think of their lives and identities like a wheel, with themselves at the center, and all the influences around them emerging as spokes: Maybe that’s mother, dietician, wife, cook, lover of romance novels. Disability may emerge as another spoke, she says, but it shouldn’t consume that center spot, and being around people who share that experience can be helpful.
Maas’ medical team didn’t make moves to connect her with fellow disabled people, and Brown had a similar experience. While nurses taught her about the basic management of her ileostomy site in the hospital, they sent her home with pamphlets which were “obviously aimed at someone in their 60s, not a 28-year-old.” For both, it was the internet that led them to communities of people with shared experiences. “I stopped thinking of it entirely as chronically ill, and started thinking of it as disability, and it doesn’t have to be entirely a bad thing,” says Maas. “Maybe it was a second adjustment period.”
There’s also a field of counseling that specifically applies to helping people adjust: Rehabilitation counseling. Just as people may have physical rehab to help them learn to use mobility devices, learn more about physical limitations, or re-learn certain skills, counseling can provide them with important coping techniques, says Kaplan.
Transitioning into a different life isn’t the end.
Both Kaplan and Rausch note that feelings of isolation, extreme loneliness, despair, and/or hopelessness are a bad sign. People facing newly-acquired disabilities who feel themselves slipping away from the world might want to get proactive about seeking counseling and community. Their friends and loved ones can also offer support — that may include things like connecting people with services, helping out around the house, or just making a point to spend time with people while they explore their new lives. “If you can adapt a little thing,” Maas says, it will bring you one step closer to comfort in your body, and that, in turn, can bring you one step closer to adjustment.
“The transition is hard. It sucks, there is no doubt. Things are not going to be the same, but you will learn to adjust and it will become normal. Once you’re through the transition you will be yourself again, if a slightly different version,” says Brown. “Try to find people to joke about it with if you can.” She acknowledges that it’s okay to feel sad or angry or frustrated, too, or to wish that you weren’t disabled.
There’s no right or wrong trajectory for adapting to disability.
Some people find themselves joining the disability pride movement and beginning radically new chapters of activism in their lives. Others settle into their new selves, but don’t necessarily embrace disability as part of their identity. Learning about the different models of disability — social and medical being the most common — and connecting with people who share your experience can be a powerful inoculation against isolation and fear, and there’s no shame in seeking support to help you come to terms with a big life change.