The Family Illness Support Center

Every person is unique, but when you face a challenge like family illness, you are never alone.  Countless men, women and children have faced the exact same crisis and have survived and thrived.  The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Internet and assembled links to the very best family illness resources: articles, blogs, forums and tools that can help you make better decisions and take action to overcome the range of physical, emotional and other challenges that you face.

As you’ll see, we always welcome your ideas and suggestions to make this Family illness Guide even more helpful to survivors like you.   

JUST FOUND OUT 

Survivors Say: Best Resources for Family illness

• MEDEM: Family Disruptions - Illness and Injury
  
• National Institute of Mental Health
  
• Elder Care Advocates: Coping with Chronic Illness

The Big Picture

Family illness is a difficult problem to have to face. No matter who it affects, an elderly family member that has a recently diagnosed chronic illness, a child with a mental disorder or a parent who can no longer be a caregiver, family illness takes its toll emotionally and physically on all persons concerned.

Once diagnosed, it's important to be able to understand the specifics involved with the illness. Obtain a copy of the diagnosis and read through each portion with your doctor to better understand the disease.

Your Family illness

If your family illness is mental, visit this link to get the treatment you need:

Depression: Welcome to Depression Central

If your family illness affects a child or baby, visit this link to learn more:

Parents: The Online Home of American Baby, Parents, and Family Circle

If your family illness is chronic, or affects an elderly member of the family, click below:

Elder Care Advocates: Coping With a Chronic Illness in Your Family 

Your World

After finding out about an illness in your family, it is  important to have emotional support for the  difficult time you are going through. For advice on dealing with the range of emotions you may be experiencing visit:

National Alliance on Mental Illness: Frequently Asked Questions

Family illness Myths

• There is no treatment for mental illness
  
• You can’t help a person with mental illness
• Chronic illness in families cannot be prevented

Information and Recommended Links for Survivors

• Elder Care Advocates: Coping With a Chronic Illness in Your Family 
• National Institutes of Health: How Family and Friends Can Help
  
• Medem: Family Disruptions - Illness and Injury
  

Types of Treatment

Medications

Medications can often be beneficial in treating mental illness, like depression:
National Institute of Mental Health:  Diagnostic Evaluation and Treatment

Cancer Risk Assessment

Cancer can sometimes be linked to genetics. By screening for cancer within families, it can sometimes be prevented. If cancer runs in your family, visit:
National Cancer Institute: Purpose

Managing behavioral symptoms

Some diseases, like Alzheimer's Disease (AD) may run in families. There is no known cause of AD and treatment options vary and focus on different aspects.
National Institute on Aging: Treatment

Possible Treatment Side Effects

While not all family illness is treatable, depending on the diagnosis, the symptoms may at least be prevented. Many medications come with side effects and warnings. Look up your drug treatment or medication on this database to find out if it has side effects:

Drugs.com: Drug Side Effects

New Therapies

Scientists are constantly conducting new studies in the field of genetics to prevent family illness from affecting entire families. This is a link to case studies being done on various illnesses that commonly affect families.

Centers for Disease Control and Prevention: Case Studies

Holistic Treatments

Some diseases may be treatable through natural means, changes in diet and holistic supplements. To find out more about holistic healing and the benefits it may provide, visit this link:

University of Michigan Health System: Holistic Family Medicine

Creating a support circle

• Set up your TSC Survivor Profile
• Join support groups of other survivors or set up your own
• Interact and provide updates on your profile or our forums

Insurance & Work Matters

Insurance Matters

This link helps families with special needs and chronic illness find an insurance plan that best fits their needs:

Go Health Insurance: Family Health Insurance 

Work Matters

To learn what your rights at work are as a member of a family with illness:
Take Care Net: Work & Family Bill of Rights

Health-care Providers Who Can Help

Different doctors specialize in different diseases.  To learn more about genetics and how some diseases run in the family, click here:

Wrong Diagnosis: Genetics Center

Resources to Find Doctors

To find a doctor that specializes in mental health issues:

Mental Health America - Where Can I Go For Help?

To find a doctor by their specialty:

WebMD - Physician Directory

The Emotional Roller-coaster

Surviving with a family illness is difficult, no matter who it affects or what the disease or condition may be. Understanding the diagnosis, treatment options and how to care for the afflicted individual are all important tasks, but they can also take an emotional toll. Connecting with people who have walked in your shoes is important to help decrease the stress of the situation.

Books Survivors Recommend

• Living With Chronic Illness: Days of Patience and Passion
• Making Changes: Family Voices Living With Disabilities
• Taking Charge: Overcoming the Challenges of Long-Term Illness
• We Are Not Alone: Learning to Live with Chronic Illness

What Survivors Wish They’d Known

Communicating with Your Health-care providers

• Be prepared. Bring a list of questions you want to ask and you may want to bring a friend or family member to ask questions as well. Take notes on the answers.
• Bring a list of medications that the family member with the illness takes. If the doctor prescribes a new medication, make sure that it won’t interfere with any others.
• Don’t hold anything back, make sure the doctor knows everything about the illness, symptoms, treatments and history. Ask if a specialist is necessary or if a second opinion would be a good idea.

Dealing with Family illness: Information and Recommended Links for Co-Survivors

How you can help

• Role reorganization might be necessary. Reassign tasks to relieve the burden for the ill family member, but make sure to include them in any chore they can handle.
• Include all family members in conversations about the illness so that everyone knows what is going on.
• Make sure that the ill family member is included in conversations and activities as much as possible to help them adjust and not feel isolated.

What to say   

• "I feel…”
• "How can I help?”
• “If I do this, you can now do that”

What not to say

• "Do this”
• "Don’t worry about it”
• "I can handle it all”

Things you can do for a survivor every day

Offer as much help as you can, while still giving them as much independence as they had before the illness. Swapping chores for easier tasks is one way to help. Include them in as much daily activity as possible and make sure they know what is going on with communicating with other family members.

How to build a support network

• Set up your TSC Co-Survivor Profile
• Create a support group for your friend or family member.
• Interact and provide updates

How to help a survivor deal with day-to-day challenges

Preparing the School for Your Child with Illness:

Family Education: What to Do When Your Child is Sick?

Tips on Going to work with a chronic illness:

WebMD: How to Handle a Chronic Illness at Work

After a family member recovers from an illness, the relief can be overwhelming. Reaching out to others and sharing your story cannot only help them, it can also help you.   

Remission / Recovery / Recurrence

Dealing with recovery of mental illness can be hard and recurrence is a possibility. Look at these statistics to help you on your journey:

Not Alone: Recovery From Severe Mental Illness

For an incredible story of a survivor of a family member with mental illness and the feelings she experienced during treatment and after recovery, take a look at:

Depression and Bipolar Support Alliance: Recovery From a Family Illness

Give back

During your experience with family illness, what helped you the most? For many, it is talking about the problem with others. To share your own experience, you can create a profile, reach out to other survivors, join support circles or share your story by following the links at TheSurvivorsClub.org. Check out some of the best charities for supporting family illness and offering support to survivors:

Health Talk Online 

If you find out that the treatment for your ill family member has failed, it is important not to dwell on the bad news and to look forward. To help you understand your grief and deal with death:   

Help Guide: Coping with Grief and Loss
   
For advice on what to do from a practical standpoint after the death of a  family member:

End of Life Care: After Death Occurs Checklist