Frequently Asked Questions
Or the things we have just wanted to know at some point in our journey:
How do I prepare for a doctor’s appointment so I don’t get overwhelmed and forget things?
Preparation is about pacing yourself and removing the pressure to remember everything on the spot. Keep a running note on your phone or a notebook in the week leading up to your visit. The night before, distill that list down to your top two or three priority concerns. It is entirely acceptable to hand a copy of this short list directly to your provider at the start of the visit so you can share the burden of keeping the appointment on track.
What if I am preparing my child for the appointment?
Part of this depends on their age. If there are blood draws, we use numbing cream to help with pain and work really hard at increasing hydration the day before. Keeping a bag of fun things for them to do, maybe include something special, can help make things easier. Headphones are important to allow adults to have adult conversations. Be clear about what is happening, ask for clarity from the medical professionals and ground yourself in what an amazing caregiver you are.
How can I keep my mind from spinning out when receiving a lot of information in the exam room?
It is completely normal for your nervous system to kick into overdrive when navigating complex health information. Practice the pause. You have the right to literally say, “I am taking in a lot right now. I need a moment to process this before we move on.” Grounding yourself by feeling your feet on the floor, or taking a slow, deep breath, can help reset your system. If you have a caregiver present, empower them to be the designated note-taker so you can focus entirely on listening and breathing. Ask for your patient notes to be printed before you leave.
Wait, you mentioned numbing cream, what is that?!
Glad you asked! It is prescription-strength lidocaine that your doctor can prescribe. For us, it is the difference between tears and comfort during blood draws. You can get lidocaine in the form of Icy Hot at any pharmacy, but the prescription stuff is worth the effort. Follow the instructions given to you, but instead of using Band-Aids that hurt sensitive skin, we wrap our child’s arm in kitchen plastic wrap. Then tell her that she’s leftovers. Mom jokes are almost always a good idea.
How do I express my needs to my care team or family without feeling like a burden?
Shifting how we communicate can relieve that heavy feeling. Instead of focusing on what is going wrong, try framing your needs around specific observations and clear requests. For example, rather than saying “You never help me,” try, “When I have to manage my medications on my own, I feel overwhelmed. Would you be willing to help me … ?” and provide a clear doable ask. This reduces defensiveness and opens the door to a working partnership..
How do I handle it when friends or family offer toxic positivity or unsolicited medical advice??
You can validate their intention while holding a firm boundary. A phrase like, “I know you’re sharing this because you care about me, but right now I just need space to vent without looking for solutions,” protects your energy while acknowledging their care. This often comes from wanting to help you and not knowing what to do. Sometimes people need to be reminded that just being there and listening is a gift they can give you.
As a caregiver, how do I hold space for my loved one while managing my own exhaustion?
You cannot pour from an empty cup, and acknowledging your own limits is the first step in sustainable caregiving. Validate your own feelings of burnout without guilt. It is vital to carve out moments of recalibration for yourself—whether that’s a five-minute walk, a quiet cup of coffee, or stepping away to take a few deep breaths. We know this is so hard to do from personal experience! Your well-being is a critical component of your loved one’s care plan.
What do I do when I feel overwhelming grief for the life or abilities I had before my diagnosis?
Grief is not a linear process, and it is completely valid to mourn the loss of your past self, your expectations, or your previous routines. Allow yourself to feel the sadness or frustration without immediately trying to rush to a “silver lining.” Healing includes holding space for the pain of transition. Acknowledging this grief isn’t giving up; it is an honest and necessary part of your recalibration process.
Why is the creator of this site so focused on the word recalibrate?
Great question! I have asked myself that a lot. My daughter’s medical decline and eventual diagnosis has really made me have to shift how I look at things and were I invest my time and energy. Coming from a family with a mechanical background, the idea of tightening or losening things or recalibrating equipment speaks to the fabric of who I am and how I was raised. The word has stuck and I use it in many ways to remind myself that life is full of adjustments. Click here for more about Elizabeth.
How do I explain to others that I ,or my child, have limited energy today when I, or they, looked “fine” yesterday?
Chronic conditions and healing are inherently unpredictable, and you do not owe anyone an exhaustive medical explanation for your reality. We often times feel like we have to overshare or explain when really we just need to set down boundaries. Try using clear, neutral observations to communicate your boundaries. A simple, “My body is requiring more rest today, so I need to step back from our plans,” is a complete sentence. Remember that needing rest is a reality of your health, not a personal failing.
I feel guilty asking for help because it feels like it is my responsibility to care for my loved one. How do I get past this?
Caregiving was never meant to be a solo endeavor. Asking for support isn’t a sign of failure or an inability to handle your responsibilities; it is a vital strategy for long-term sustainability. Try moving away from general calls for help and make specific, finite requests. For example, “Would you be willing to drop off dinner on Thursday?” or “Could you sit with them for an hour on Saturday so I can leave the house?” Specific requests often make it easier for others to say yes and easier for you to accept.
I don’t feel guilty asking for help because I just don’t ask for it.
Let’s work on that.
How do I navigate the changing dynamics of my relationship now that my primary role is “caregiver”?
The shift from a partner, child, or sibling into a caregiving role is a profound transition that often brings its own grief. It is important to intentionally carve out time to step out of the medical-management role and just be family. Even small-moments (watching a favorite show together, listening to music, or sharing a meal without discussing appointments or medications) can help support the foundational core of your relationship.
I want to help my friend/family member, but I don’t know what to do. Should I just tell them to “let me know if you need anything”?
While “let me know if you need anything” comes from a place of deep care, it inadvertently places the mental load of delegating onto someone who is already overwhelmed. Trust us, we have said this phrase a lot knowing it was not really helpful but not knowing what to do! Instead of a broad offer, provide concrete, actionable choices. Try asking, “I am going to the grocery store this afternoon, can I drop off milk and fresh fruit for you?” or “I have some free time this weekend; would it be helpful if I came over to mow the lawn or do a load of laundry?”
How should I respond when my loved one is venting about their pain or frustration?
It is a natural instinct to want to fix the problem or offer an optimistic perspective, but what is usually needed most is simple validation. Instead of offering advice or saying “it could be worse,” try responding with, “That sounds incredibly hard, and it makes complete sense that you are frustrated. I am here with you.” Being a safe place for them to express difficult emotions without being managed or “fixed” is one of the most supportive things you can do.
What if I think they really should be doing something different?
All safety concerns aside (so things are happening that put someone at risk mentally, emotionally, medically, spiritually, you get it) let’s watch “shoulding on people”. Guilt comes with life and it seems to increase with any kind of medical concern. Be careful that role of armchair quarterback is a comfortable one for a lot of us and it does not produce good outcomes!
Have a question you wished we answered? We are just getting started but would love your feedback!
If you want us to add something, feel free to reach out to us. We are stronger together.