# Grief and Adjustment Journal Prompts
Journaling can support emotional processing for Alström families. This collection of prompts is organized by life stage and situation. Use what fits. Skip what doesn't. Write for as long or as briefly as you want.
For users who don't write, audio journaling (recording voice memos) works equally well. The point is processing, not perfect prose.
How to use these prompts
- Pick one — don't try to answer them all at once
- Set a timer if helpful — 10-15 minutes can be enough
- No judgment — these are private; nothing has to be polished
- Return often — same prompt, different days, gives different insight
- Combine with other coping — journaling complements but doesn't replace therapy
Section 1 — At and after diagnosis
Processing the diagnosis itself
> What were the moments around the diagnosis I want to remember?
> What were the moments I wish I could forget?
> What did I assume about my child / family member / future before this? What's changed?
> What's the hardest thing about today?
> Who has shown up for us? Who hasn't? How does that sit?
> If I could have a conversation with the version of me from before the diagnosis, what would I say?
> What am I grieving that hasn't happened yet?
Anger and unfairness
> What am I angry about right now?
> Who or what am I angry at?
> If anger were a color or a sound, what would mine be?
> Underneath the anger, what else is there?
> Is there anything I'd want to do with this anger, if I could?
Questions and uncertainty
> What am I not letting myself ask?
> What scares me to consider?
> What do I wish someone could tell me?
> What's a question I could actually answer if I gave it some time?
Section 2 — As a parent of a child with Alström
About the parent-child relationship
> What do I love most about my child today?
> What about my child has nothing to do with Alström?
> What do I see in them that no one else might?
> What do I want my child to know that I haven't said?
About the parenting work
> What's hardest about parenting my child this week?
> What's been working that I want to remember?
> What am I afraid of getting wrong?
> When was the last time I felt confident as a parent? What was happening?
About yourself
> Who am I outside of being [child]'s parent?
> What have I given up that I miss?
> What part of myself is still mine?
> What am I learning about myself that I didn't know before?
About the future
> What do I hope my child experiences as they grow up?
> What do I hope they remember about me?
> What kind of adult do I want to support them in becoming?
> What do I want to release worrying about today?
Section 3 — As an adult living with Alström
About yourself
> What do I want people to understand about my daily life?
> What's hardest right now?
> What's working that I want to remember?
> What do I want for myself this year?
About vision / hearing changes
> What did I lose with my last vision/hearing change?
> What did I learn or gain?
> What am I scared of losing next?
> Who is helping me through this? Who could?
About relationships
> Who really sees me, all of me?
> Who do I want to be closer to?
> What do I want from people I love that I haven't asked for?
> What boundaries do I need to put in place?
About work / school / purpose
> What gives me energy?
> What drains me that I could change?
> If I imagine my best self in three years, what is she/he/they doing?
> What's a small step toward that today?
Section 4 — As a partner / spouse
About the relationship
> What do I love about my partner that this hasn't changed?
> What do I love about my partner that has emerged through this?
> What do I miss about how things were?
> What have we built together that I don't want to lose?
About yourself in the partnership
> Am I being honest with my partner about how I'm doing?
> What do I need from them right now that I haven't asked for?
> What am I doing for them well? What could I do better?
> When was the last time we connected as ourselves, not as a caregiving team?
About future and planning
> What do we want for our future together?
> What's getting in the way of that?
> What conversation have we been avoiding that we need to have?
> What's one small thing we could do this week to nurture us?
Section 5 — As a sibling
About your brother / sister
> What do I love about my sibling?
> What's frustrating about being their sibling?
> What do I wish people understood about our relationship?
> What's something I want to remember about them?
About yourself
> How am I being affected by all of this?
> What feelings am I not letting myself have?
> Who can I talk to about this honestly?
> What do I need that I'm not getting?
About your future
> What do I want for myself that I sometimes feel guilty about wanting?
> What can I do without feeling like I'm abandoning my family?
> What kind of person do I want to be?
> How do I want my sibling and I to relate as adults?
Section 6 — Living with progressive change
For families adjusting to ongoing changes — vision loss, hearing changes, new complications.
Processing change
> What's changing right now? Name it specifically.
> What feelings come up when I think about that change?
> What was true yesterday that's not true today?
> What's still true that I want to remember?
Adjusting
> What practical things have I adapted? What still needs to be adapted?
> Who can help me with what's hard?
> What's a small thing I could do today that would help?
> Where do I keep getting stuck?
Holding both sides
> What's grief about this change?
> What's growth about this change?
> What's neither — just neutral, just life?
> Where can I find rest in the middle of this?
Section 7 — At difficult moments
For specific hard moments. Pick what fits.
After a hard medical visit
> What did I hear today that I want to think about?
> What did I hear today that I'm not sure I believe?
> What questions do I still have?
> What's one action I want to take from this visit?
After a hospitalization
> What was hardest about that?
> What did I learn — about my child, about myself, about our team?
> What worked that I want to remember for next time?
> What didn't work that I want to address?
> Who showed up for us? How can I thank them?
After a setback
> What just happened?
> What do I need right now?
> Is this temporary or longer-term?
> What's still okay even though this isn't?
When others say something insensitive
> What did they say?
> What did I feel?
> What do I wish they'd said instead?
> Do I want to address this with them? How?
> If I let it go, what would help me let it go?
Section 8 — On hard days
> What is making today specifically hard?
> What would help in the next hour?
> Who could I reach out to?
> What's one thing I could do that's just for me today?
> What's true about today that won't be true forever?
Section 9 — On surprisingly good days
> What's good about today?
> What did I do that worked?
> Who is helping me without me even noticing?
> What about my life right now is more okay than I usually let myself acknowledge?
> What can I take from today into a harder day?
Section 10 — Reflective prompts (longer or recurring)
For periodic deeper reflection.
Annual reflection
> What was this year about for me?
> What changed in my child / family member / myself?
> What did I do well? What would I have done differently?
> What do I want for the year ahead?
> Who am I becoming?
Mid-year check-in
> What's been hardest in the last six months?
> What's been most meaningful?
> Where am I stuck?
> What would I tell a friend going through this?
After a milestone (birthday, anniversary, school graduation)
> What did this milestone mean to me?
> What did I notice about my child / loved one / myself?
> What do I hope is true a year from now?
> What memory of this milestone do I want to keep?
Section 11 — Letters
Sometimes a letter helps more than freeform writing. You don't have to send any of these.
A letter to your past self
> Dear [you in the past, on a specific date]: > > Here's what I want you to know... > Here's what's coming... > Here's what will be hard... > Here's what will be unexpectedly good... > Here's what I've learned...
A letter to your child
> Dear [name]: > > Here's what I want you to know about you... > Here's what I see in you... > Here's what I hope for you... > Here's what scares me, and what I'm doing about it... > I love you...
A letter to the diagnosis itself
> Dear Alström Syndrome: > > I didn't choose you... > Here's what you've taken from me... > Here's what you haven't taken... > Here's what I refuse to give you... > Here's what I'm doing in spite of you...
A letter to a future version of yourself
> Dear [you in 5 years]: > > Here's where I am right now... > Here's what I'm learning... > Here's what I want to ask you... > Here's what I hope is true for you...
A letter you'll never send
A letter to someone — a doctor who didn't listen, a friend who hurt you, a family member who didn't understand. You don't have to send it. Sometimes writing it is enough.
Section 12 — Quick prompts for low-energy days
When you don't have much in you:
- Three words for today: ____ ____ ____
- One thing I'm grateful for: _____________________
- One thing that's hard: __________________________
- One thing I need: _______________________________
- One person I love: ______________________________
- One thing my child / loved one did today that I want to remember:
_____________________________________________________
- One thing I did today that I'm proud of:
_____________________________________________________
Tips for sustainable journaling
Keep it small
A few sentences is enough on most days. Don't make journaling another thing you fail at.
Make it accessible
For users with vision impairment, voice memos work as well as written journaling. Apple Voice Memos, Otter.ai, or any audio recorder.
Don't reread immediately
Write today. Read back later. Hot grief in writing is different from looking back at it months later.
Combine with movement
Journal while walking. Journal in voice memos during a drive. Movement can unstick processing.
Combine with therapy
A therapist can help you make meaning of what you write. Bring journal entries to sessions if helpful.
Honor your privacy
Your journal is yours. You don't have to share it. You don't have to make it presentable.
When journaling stops helping
Some weeks you'll write daily. Some months you won't write at all. Both are fine. The journal is here when you come back.
When journaling isn't enough
Journaling supports emotional processing but doesn't replace:
- Therapy
- Medication for depression / anxiety when indicated
- Connection with people
- Practical action when needed
- Crisis support when in crisis
If journaling reveals serious distress — persistent low mood, suicidal thoughts, inability to function — reach for professional help. Crisis resources: 988 (US), Samaritans 116 123 (UK).
Frequently Asked Questions
Is journaling really useful, or am I just venting?
Both. Venting is one form of journaling. Reflection is another. Imagining different futures is another. All of these can be useful.
Should I share my journal with my therapist?
If you want. Some therapists incorporate journaling. Some don't. Discuss with yours.
What if I'm not a writer?
Journaling isn't writing for an audience. It's processing for yourself. Bullet points, lists, single words, half-formed thoughts — all valid.
What if it makes me feel worse?
Sometimes processing surfaces hard feelings. That's part of the work. If journaling consistently leaves you worse, take a break and discuss with a therapist.
What format is best?
Whatever you'll actually use. Paper notebook, digital app, voice memo. Whatever's accessible to you.
Related reading
- Mental Health and Wellbeing in Alström Syndrome
- Caregiver Burnout in Alström Syndrome
- Mental Health Safety Plan
- Caregiver Self-Care Plan
- Adjusting to Vision Loss as an Adult With Alström
- Bereavement Resource Pack
These prompts are for informational and self-care purposes. They support emotional processing but don't replace professional mental health care when needed.