Long COVID patients will be the first to tell you that getting help — whether medical, financial, or emotional — is no easy feat. It’s a consequence of the relative lack of information on the condition.
But help is out there.
Though the medical field, government, and society at large still have a long way to go in understanding the illness, there are resources and support available for people who identify as long-haulers, both virtually and in the Boston area.
Finding a physician
One of the biggest hurdles for long COVID patients is finding a health care professional equipped to care for them. Some in the medical field recommend starting with your primary care physician; they will be armed with the background of your medical history, which can help with diagnosis and treatment.
Advertisement
If you’re searching for a new provider, the COVID-19 Longhauler Advocacy Project has crowdsourced a list of “COVID competent health care providers” submitted by patients, which includes a handful of Massachusetts physicians with a range of specialties.
Enrolling in a long COVID clinic
A number of clinics in the Boston area are dedicated to patients suffering from long COVID. Beth Israel Deaconess Medical Center, Boston Medical Center, Brigham and Women’s Hospital, and Boston Children’s Hospital are some of the regional sites that provide multidisciplinary care to those dealing with the long-term impacts of COVID-19. Survivor Corps, a patient advocacy group, has compiled a list of post-COVID care centers across the country.
Some of these local hospitals are also participating in a nationwide study of long COVID led by the National Institutes of Health, and are actively recruiting participants. (To find a study and sign up, visit studies.recovercovid.org.)
Advertisement
Applying for financial assistance
Financial concerns are top of mind for many long COVID patients, with a loss of income and skyrocketing medical bills being a common result of the chronic condition. There are no specific financial assistance programs for long COVID patients, but a number of city and state programs are available to those struggling to make ends meet — including home heating and energy assistance, SNAP benefits for food costs, and housing assistance programs.
Joining a support group
Body Politic, a patient-led health justice organization, developed a COVID-19 support group on Slack that is now 11,000 members strong, with forums to discuss specific ailments, financial concerns, mental health struggles, and more. (To see more information about the group and request to join, visit wearebodypolitic.com/covid-19.)
There are also a number of Facebook support groups for those with long COVID — including specialized groups for BIPOC women, people who were never hospitalized, residents of specific states, and more.
Securing work accommodations
Long COVID has forced many people to leave or cut back on their jobs. Workforce accommodations — which include anything from remote work capabilities to modified working hours to job reassignment — have the potential to keep those with long COVID employed. Since long COVID can be classified as a disability under the ADA, workers who are long-haulers may be entitled to certain workplace accommodations, according to the US Department of Labor. The Job Accommodation Network is available for free consultations to help people determine what workplace flexibilities might be available to them. (Go to askjan.com to learn more.)
Advertisement
Applying for Social Security disability benefits
One of the last lines of defense for people whose conditions are expected to preclude work for at least one year is Social Security disability benefits — either Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). Because the majority of disabled-worker applications are denied, a lawyer can help manage your case.
The National Organization of Social Security Claimants’ Representatives — a bar organization for lawyers who represent people trying to get Social Security disability benefits — operates a referral service for people to be connected with a lawyer near them. (If you want to talk through your situation with an attorney, call 845-682-1881, or visit nosscr.org.)
Dana Gerber can be reached at dana.gerber@globe.com. Follow her @danagerber6.