Is Depression common when having a disabled sibling?

Disabled Sibling Depression

Depression is a highly prevalent mental health disorder that affects a large portion of the population, with approximately 14% of adolescents aged 12 to 17 suffering from at least one major depressive episode a year and approximately 21% of adults. But, studies have shown that people with a disabled sibling are approximately 63% more likely to experience depression compared to children with non-disabled siblings. There are many risk factors present in the lives of people with disabled siblings that can raise the likelihood of developing a mental illness, such as depression and anxiety, including feelings of loneliness or isolation, an increase in environmental stressors in the home, increased responsibility as a caregiver from a young age, and anxiety about the well-being and lifespan of their disabled family member. This stress, often beginning for at a young age, can lead to behavior problems and emotional problems for the sibling, which may be overlooked at home.

For the wholistic well-being of every member of the family, it is important to recognize the potential for depression and anxiety to develop for non-disabled siblings. If you are experiencing depression, know that you are not alone - there are many resources available to support those with depression and anxiety. At New York-based Sibling Advocacy, we are committed to being a support group and network for those who are experiencing depression. This article shares resources available to find out more about mental illness, find an affordable therapist and/or medication, and information on how to support family members with mental illness.

What are disabilities?

A disability is defined as “a condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them,” according to the CDC. There are many types of disabilities and the experiences of the disabled community are varied and diverse. Intellectual disabilities are defined as disabilities that significantly impact a person’s ability to live and work in the community, including difficulty with communication, self-care tasks, thinking, socialization, and problem solving. Examples of intellectual or developmental disabilities can include autism spectrum disorders, cerebral palsy, down syndrome, and more. Physical disabilities are also very varied but often have in common an “impairment to a person’s physical functioning, usually their mobility, dexterity, or stamina.”

When discussing disabilities, it is important to take into account the language that is being used. “Disabled” is often an overly broad term that fails to recognize the complexities and diversity within the community. When it comes to talking about people with disabilities, it is best to ask the individual about the language they identify with when describing their disability. When asking someone about how they identify, they may opt for person-first or identity-first language. Person-first language means centering the individual before the disability. For example a “person with autism.” Identity-first language, on the other hand, has the disability mentioned first, for example an “autistic person.”

As a rule, it is best to avoid language that discusses disability in terms of impairment, unless quoting someone or a source directly, as impairment implies that a disability makes a person “lesser.” This includes language such as “special needs” or “mental retardation.” When talking about a disability in comparison to a non-disabled person, it is also important to apply this rule, avoiding such language as “typically developing” or “well sibling.”

What is depression?

Depression is a serious mood disorder that affects one’s ability to think, emote, and accomplish daily tasks. Depression is considered a type of disability that falls under the category of mental illness. Researchers estimate that 1 in 15 people will experience a depressive episode at some point in their life and siblings of people with disabilities are more likely to experience depression than those without disabled siblings. Depression can manifest in many ways but key symptoms include:

• Feeling down or sad for a prolonged length of time

• A reduction of interest in activities that would typically bring joy or a loss of feeling pleasure

• Changes in sleeping habits - either sleeping too much or not enough

• Reduced energy levels

• Feelings of guilt and worthlessness

• Suicidal thoughts

• Trouble concentrating, problem solving, or accomplishing tasks

It is important to note that depression is different from feeling sad or even feeling grief. Depression is experiencing the symptoms above for a prolonged period of time - usually more than two weeks. Depression can be brought on by loss or traumatic event but is distinct from grief. When grieving, feelings of sadness ebb and flow while depression is characterized as feeling “down” for a prolonged amount of time. People experiencing grief usually do not feel a reduction in their self-esteem, whereas the onset of depression coincides with feelings of worthlessness or guilt. Grief and depression can be present at the same time and grief can be a risk factor for developing depression.

Risk factors for developing depression in siblings of children with disabilities

Family studies published in the Journal of Pediatrics researching the siblings of individuals with disabilities have found a number of risk factors commonly present in this population’s life that can contribute to the development of depression. Environmental factors, such as experiencing trauma, grief, or longterm stress can contribute to the development of depression:

Feelings of Isolation: In a study done by Bagenholm and Gilberg, evidence was presented that school-age children with a disabled brother or sister were more likely to experience loneliness and isolation than their peers with non-disabled siblings. Goudie, Havercamp, Jamieson, and Sahr reported in their research that siblings of a disabled child had more difficulty with interpersonal relationships with other children their age. This could be for a number of reasons: feeling like other kids their age do not understand their home lives, peers bullying their disabled younger or older sibling, or feeling embarrassed about their family member. Feelings of loneliness can also occur at home if parents are not taking opportunities to spend one-on-one time with their non-disabled child. Isolation and loneliness can put people at risk for developing mental health disorders such as depression.

Over-reliance on non-disabled sibling for caregiving: Often times, parents will lean on their non-disabled child for caregiving responsibilities and other household chores. This can lead young children to grow up too quickly in a way that is sometimes called “parentification.” When young or high school-aged children are given too much responsibility for the health care of a disabled sibling, it can put a lot of pressure on the sibling than what many of their peers experience. This can even occur with adult siblings, meaning those over 18 years old, who are the primary care giver for a disabled sibling. In a study done by O’Neill and Murray studying anxiety and depression in adult siblings of people with intellectual disabilities and developmental disabilities, such as autism spectrum disorders and Prader-Willi syndrome, researchers found that adults with disabled siblings are more likely than the control group to be at risk for depression and anxiety.

Guilt with regards to sibling relationships: Guilt can be a strong risk factor in the development of depression and studies have shown that many children and adults resent their sibling’s disability or feel jealous about the attention their older or younger brother or sister may receive from their parents. Often these feelings in siblings are accompanied by guilt for feeling this way and feelings like they cannot express the feelings of resentment, jealousy, or guilt.

What to do when experiencing depression

Developing depression can feel very isolating and can lead to feelings of hopelessness. If you are experiencing depression, you are not alone, and there are many interventions available to provide support and information. Many organizations exist that make it easier for those seeking mental health intervention to find help and for loved ones of those experiencing depression to find information about how best to support their loved one.

Substance Abuse and Mental Health Services Administration (SAMHSA): This organization offers a 24-hour, daily hotline for those experiencing a mental health impairment to receive a referral for treatment. The consultation for the hotline is free and available any time, though this is not a crisis hotline with mental health service providers so it should only be used for referrals. SAMHSA can help refer individuals to local treatment institutions, support groups, and other support organizations. For people without insurance or who are underinsured, SAMHSA can point you to state-funded treatment options or psychiatry offices who take patients on a sliding payment scale. SAMHSA can be reached at 1-800-662-4357

National Alliance on Mental Illness: The National Alliance on Mental illness has a hotline number that can be called or texted to speak to a trained crisis clinician who can help in a crisis situation, such as a suicide attempt or substance use crisis. The number to call in a crisis is 988.

The National Alliance on Mental Illness also offers support groups and educational materials to find out more about mental illnesses such as depression and anxiety disorders.

Anxiety and Depression Association of America: This organization helps with prevention and treatment of various mental health disorders including anxiety disorders and depression. The organization offers support groups and educational resources, as well as information on how to get help.

Care for Your Mind: Health care for mental health disorders can be costly and finding therapy providers who are in network and affordable can be very tricky. Care For Your Mind offers advice on how to navigate finding help and medication that is affordable and available.

Pharmaceutical Research and Manufacturers of American Medicine Assistance Tool: When searching for prescription medications at a reasonable cost, it can be difficult to fine. This website is a search engine for comparing prices for medication and learning more about what insurance covers.

Families for Depression Awareness: It can be challenging for parents or siblings of those with depression to understand the disorder and be supportive. Families for Depression Awareness offers educational materials to help family members recognize depression, be supportive on a daily basis, and manage mental health crises.

The Trevor Project: The Trevor Project is an organization specifically created for members of the LGBTQ+ community who are struggling with depression and suicidal thoughts. The organization offers community support groups and access to information for supporting others. There is also a hotline for speaking with a mental health service provider, specializing in struggles that members of the LGBTQ+ community face. You can call 866-488-7386 or text START to 678-678.

Sibling Support Project: The Sibling Support project is an organization dedicated to creating community among those who’s siblings have a disability. The group offers meet ups between “sibs” with the opportunity to play and talk with other young people going through a similar experience at home. The group is not a therapy session but rather can have therapeutic benefits in finding community and group support.

How can Sibling Advocacy help?

Sibling Advocacy is an organization which I started during my senior year in high school. It is dedicated to creating a supportive community for individuals with disabled siblings. The site offers a platform for members to share their stories and know that they are not alone. Through sharing information, we hope to be better able to advocate for individuals with disabilities.