COPING WITH GSDWHAT’S THE SECRET?

Lisa Merlo, Ph.D., M.P.E.University of FloridaDepartment of Psychiatry

Challenges Associated with GSD

• Feeling left out/ Missing events

• No sugar, dairy, fruit, gum• Decreased energy/Getting

tired quickly/Not keeping up• Feeling bad, sad, or mad• Having to drink cornstarch• Treatments, pills, shots• Having to explain GSD to

others/answer lots of questions

• Overall health risks• Low sugar ruining whole day

• Never get a break from it• Inconvenience/mess of

carrying cornstarch everywhere

• Unfashionable alarm watches

• Waking up in the middle of the night

• Going to the hospital• Treatment team is far

away• Hard to plan meals• Stigma

Challenges Associated with GSD

• Feeling left out/ Missing events

• No sugar, dairy, fruit, gum• Decreased energy/Getting

tired quickly/Not keeping up• Feeling bad, sad, or mad• Having to drink cornstarch• Treatments, pills, shots• Having to explain GSD to

others/answer lots of questions

• Overall health risks• Low sugar ruining whole day

• Never get a break from it• Inconvenience/mess of

carrying cornstarch everywhere

• Unfashionable alarm watches

• Waking up in the middle of the night

• Going to the hospital• Treatment team is far

away• Hard to plan meals• Stigma

Challenges (cont.)

• Feeling full / Having to eat, even when not hungry

• Eating whole grains• Difficulty in social situations• Having to plan ahead/prepare

for everything• Interrupting activities• Checking sugar throughout day• Unable to eat much at one

time• Feeling like an outsider• Having to be extra careful

playing sports

• People staring• Having to get up early• Traveling with cornstarch• Takes a lot of time/work• Eating 7 meals a day• Getting really sick• Having to think about

every single thing you eat

• Being pulled out of class• Difficulty concentrating• G tube

Challenges (cont.)

• Feeling full / Having to eat, even when not hungry

• Eating whole grains• Difficulty in social situations• Having to plan ahead/prepare

for everything• Interrupting activities• Checking sugar throughout day• Unable to eat much at one

time• Feeling like an outsider• Having to be extra careful

playing sports

• People staring• Having to get up early• Traveling with cornstarch• Takes a lot of time/work• Eating 7 meals a day• Getting really sick• Having to think about

every single thing you eat

• Being pulled out of class• Difficulty concentrating• G tube

Take-Home Messages:

Life with GSD can be tough sometimes!

Patients, parents, siblings, other relatives, and friends are ALL affected

Coping is important for everyone!

WHY IS COPING IMPORTANT?

Medical Traumatic Stress

A set of psychological and physiological responses of patients and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences (NCTSN, 2003)

The experience of medical traumatic stress is not unique to GSD patients/families. It is seen across all chronic and severe conditions.

Distress and Impairment

Patients and families who experience medical traumatic stress are more likely to experience: Anxiety Depression Hyperarousal Re-experiencing Behavior problems Difficulty at school Etc.

These are NORMAL responses to abnormal experiences

The Good News

Adaptive coping can help patients and families manage these stressors more effectively

Professionals (e.g., pediatric psychologists, health psychologists) can help patients and families who struggle They understand how normal, functioning families can benefit from learning new coping skills and strategies

WHEN IS COPING NEEDED?

Potentially Traumatic Events Many experiences can be experienced as

traumatic by patients with GSD and their families: Point of diagnosis Early (acute), ongoing, and evolving experiences

that unfold with physical sequelae of illness and treatment

Longer term experiences (when acute treatment phase has ended)

The same objective event may not be equally traumatic to all individuals!!

SO WHAT IS COPING?

IDEAS?

“a way of dealing with a situation that does not seem to have immediate resolution”

“the ability to create a dividing line between a problem and normal daily functioning”

“learning how to be patient with a situation that is beyond your control”

“allowing yourself to be in a state of mind that allows you to live somewhat normally when you experience a crisis”

Scientific Definition

Constantly changing cognitive and behavioral efforts to manage specific demands that are appraised as taxing or exceeding personal resources (Lazarus, 1984)

In other words:Something that you think or do to make yourself feel better when you are struggling or upset

Types of Coping

Active vs. Passive

Problem-focused vs. Emotion-focused

Seeking Support vs. Avoidance

Active vs. Passive Coping

Active Coping: DOING something to

make yourself feel better

Passive Coping: WAITING (patiently?)

until things get better or until someone or something helps you

Problem-focused v. Emotion-focused

Problem-focused: Looking for a

solution or a way to CHANGE the situation

Emotion-focused: Finding different

ways to think or feel about a situation

Avoidant Coping vs. Support-seeking Avoidant Coping:

Ignoring, denying, or trying not to think about the problem

Support-Seeking: Turning to family,

friends, medical team, etc. for help (emotional and/or instrumental)

Adaptive Coping Strategies

Humor Acceptance Religion/Spirituality/ Prayer Using active, problem-solving coping when

there is something that can be done Using emotion-focused coping when the

stressor is uncontrollable Expressing emotions to supportive people Optimism Acknowledging benefits/opportunities for growth Seeking instrumental support from others Temporary distraction (e.g., music, reading,

games)

Adaptive Coping Strategies (cont.) Being strong Celebrating your health when feeling well Thinking other thoughts or think about things

differently Working harder Using medical interventions (dextrose water,

glucose tabs, lay down to rest– extra cornstarch before activity)

Punching a pillow Sticking to a schedule Preparing in advance Thinking about people who are worse off Journaling Focusing on the positives

Less Adaptive Coping

Substance abuse “Bottling up” or suppressing emotions till

they are unmanageable Self-blame Trying to deny the problem exists for an

extended period of time Feeling sorry for yourself Taking your frustration out on others

Some “Positives” of GSD

IN YOUR OWN WORDS:

• Getting special treatment• Going on exciting trips• Free stuff• Not eating sugar keeps you healthier• Learning perseverance • Having great doctors who care• Being able to eat/drink in front of others whenever

you want• Having your “issue” out on the table• Good excuse to resist peer pressure• Learning to be more responsible• Being stronger

THANK YOU!

lmerlo@ufl.edu