Invisible Illness does not get much more invisible than Dawn. I can not remember when she first told me she was sick but I promise I was shocked, even with my invisible illness spidey sense. Please listen to the end to find out the best questions to ask a sick person and why "How are you doing?" should just be removed from the conversation. We also came up with the best idea for Airbnb if they want a how to rock at helping people idea. Thank you so much for listening to Invisible Not Broken. Please subscribe to the podcast to hear more interviews and of course leave an embarrassingly glowing review on iTunes.
Until next week:
Be Kind. Be Gentle. Be a Bad Ass.
Dawn's Reccomendations for Spoonie Survival
1) Who were you before your illness became debilitating?
An "active" mom who went biking with her kids, a participant in our lives instead of an observer. An "athletic" woman...biking up Redwood Road, a gym rat.
2) Is there anything you would do if you were not sick?
Take my son and daughter mountain bike riding. Seek out trails farther away. Consider teaching full time.
3) What should other people know about our daily life?
I "bank" my energy, so if there is a busy day coming up...I plan on nothing before and after to gather up and replenish. I have a hard time committing night's out with friends as by 8pm I'm ready to go to bed.
4)What would make living and moving in the world easier for you?
More help with my kids for doctors appointments. More naps.
5) Life hacks?
Child labor! Taking my husband up on his offer to do more and telling him specifically what needs to get done. Considering ordering groceries from AmazonFresh.
6) Support from family or friends?
Yes and No..for the big trips across country yes! But for the every day, it's harder as we all don't live near one another.
7) Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?
I get more reactions from people when I'm having a tough day...when I'm feeling strong or having a good day...there's always a strange vibe like "you can do this?"
8. How has this affected your relationships?
The circle of friends has shrunk for sure. I just don't have the energy to be "out there" and putting energy out for that many people...I have to bank my energy for my kids and husband and myself. People don't reach out to me as I often end up saying "no" to going out or hanging out.
9. What are you afraid to tell even the people closest to you?
I am truly afraid of dementia. There are times that I have brain fog and can't come up with a word or forget a word or blank on something I committed to. That's part of being a parent and dealing with everything...but I can't chase that demon off. I watch my handwriting as that was what I first noticed with my mom.
10. Does the fact that your disease is invisible change how healthcare professionals treat you?
Yes, I had an Amyloid special tell me I should go running. I would love that if it weren't for the fear of stumbling and falling. Another specialist didn't believe me.