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Two Ways to Gracefully Say 'No' When Life With Rare Disease Becomes Overwhelming

Every once in a while, despite years of practice managing my daughter’s rare disease
diagnosis, rare gets the better of us in our house.

When new symptoms crop up and a battery of tests appear on the schedule, or a medication
suddenly stops working, we tend to go into lockdown mode. Phone calls are made, appointments are scheduled. We synch calendars with military-like precision, we meal prep, we break out the disposable cups and plates — and we exercise our right to say “no” or “I just need a minute.”

Even in the best of our prepping scenarios, things fall to the wayside. Annual booster shots
for the dogs, the third round of leaves littering our front yard, the annual PTA bake sale. Text messages from well-meaning friends aren’t responded to for days on end, not because we don’t care, but because the minutes that aren’t devoted to keeping our heads above water are spent reassuring our rare child that we will find answers. The precious seconds in between are reserved for our other children as we work to keep a sense of normalcy in the face of the unknown.

With the holiday season upon us, sometimes we find ourselves facing a mountain of requests at work and school — last-minute annual budgets are due and the kids need one more case of water for the holiday party. While certain things absolutely cannot wait (work, bills, appointments, etc.), remember that a little grace for yourself and others will go a long way.

We try to divide up our commitments into two categories – the “Must-Dos” and “Regrets.” If this is the year that you’ve fallen behind in your life because of rare disease and you need a breather — or you just can’t muster an enthusiastic “yes” to another round of well-intentioned holiday invites, I offer you the following email options:

Dear (boss/friend/teacher/co-worker/PTA president/client/etc.),

I hope you’re doing well. You might be wondering why I’ve been delayed in following up with you regarding (insert whatever you might be behind on here).

The truth is, I’ve been struggling with (my/my child’s/my loved one’s) rare disease diagnosis.

While I don’t mean to fall off the grid, life happens and even though I’m focused on managing (my/my child’s/my loved ones) diagnosis, I’m still juggling other aspects of my life like (clean laundry, meals, housework, homework, kid sports/activities, sleep, work, bills, friendships, relationships, insert your own) at the same time. As you can imagine, it’s a lot to manage right now.

I want to assure you that I am as committed as ever to working on (____________) and will bring the same level of commitment and focus to (____________) as I currently am to managing (my/my child’s/my loved ones) diagnosis as soon as I am able. I value our relationship and want to bring 100% of my attention and effort to this important (project, effort, meeting, etc.).

I’ll be in touch soon and I look
forward to reconnecting.

Sincerely,

Your Name Here 

Or another template, if you are unable to commit to something:

Dear (boss/friend/teacher/co-worker/PTA president/client/etc.),

I hope you’re doing well. You might be wondering why I’ve been delayed in following up with you regarding (insert whatever you might be behind on here).

The truth is, I’ve been struggling with (my/my child’s/my loved ones) rare disease diagnosis.

While I don’t mean to fall off the grid, life happens and even though I’m focused on managing (my/my child’s/my loved ones) diagnosis, I’m still juggling other aspects of my life like (clean laundry, meals, housework, homework, kid sports/activities, sleep, work, bills, friendships, relationships, insert your own) at the same time. As you can imagine, it’s a lot to manage right now.

Due to the unpredictability of my schedule right now, I regret that I am no longer able to assist with (your bake sale, planning the ugly sweater holiday party, babysitting your parakeet).

I value our relationship and I look forward to reconnecting soon.

Sincerely,

Your Name Here

If you don’t already have a support system in place to help you when you need it most, start
building one as soon as possible.

Don’t hesitate to reach out for assistance, especially around the holidays. Resources and kind faces are standing by to assist in a number of areas.

And remember, you are indeed worthy of help and kindness.