Interview With Stephanie Daly: Bone Tumors, Building Awareness, and Community : A Chronic Illness Podcast

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Website/Blog, Twitter, & Instagram Handle

www.bonetumorawareness.org, Twitter: @StephDinDC, FB: www.facebook.com/bonetumorawareness, IG: @stephmdaly & @bonetumorawareness

Name *

Stephanie Daly

Disorder Info

What is your disorder? *

Bone Tumor Survivor

At what age did your disorder become a daily issue? *

21

Who were you before your illness became debilitating? *

An active, young college student living in the city of Chicago that was happy, healthy ... alive, adventurous

What would you do if you were not dealing with your invisible illness? *

Be as active as possible, travel as much as possible, consider having children, consider many more activities and adventures

What would you like people to know about your daily life? *

How pain, limitations, and continuous treatments have affected my mental/emotional, physical state and how I have ‘managed’ and persevered

What would make living and moving in the world easier for you? *

Losing my leg, not working ... having tons of time to rest

Do you have any life hacks? *

Plan and prepare heavily for activities (for recovery), when in doubt - RICE (rest ice compress elevate), physical therapy = key, being your own advocate with physicians and healthcare

What kind of support do you get from family or friends? *

Protective and supportive yet still (for the lack of a better term) clueless as to what this really is like ... fantastic support from a new(er) relationship - and dependent on the friend/person depends on the level of support

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Absolutely ... I get stairs when I use my handicap placard, or at work, even people doubt that I don’t have the ability to do things that I’m not able to do - therefore expectations are high and I get through it (and feel good about it) although the recovery is brutal

How has your chronic illness affected your relationships? *

I didn’t date for 10 years after being very active with dating and relationships before this all started. I have had a relationship that broke up after this all started and had another relationship that this put a lot of stress on. Friendships also are tough because tough times are when you can realize NEW friends and some that you can do without.

Is there anything you are afraid to tell people in your life? *

Absolutely ... I’m afraid to talk about my rock bottom moments when I cry myself to sleep from exhaustion, or about moments when I just want to ‘quit’ my functioning life and try to go on disability ... or even the idea of losing a limb is tough to say out loud.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

At times. Thankfully I do have scars (they’re not showing) but once I tell my story and have SOME validation, that’s better. But without those ‘facts’ to back it up, it’s definitely tough

What is your best coping mechanism? *

Everything comedy / doing things I really enjoy, music / I love going to concerts, love sports ... I also lose the group of people I have cultivated with similar conditions (bone tumor awareness): without them, I don’t know where I’d be today. They understand me the MOST by far.

What are you the most concerned about and the most hopeful for in the future? *

I am the most concerned about continual issues that are caused as a byproduct of my initial diagnosis (which I already have ... injuries in other parts of my body bc of compensating) as well as the potential of losing my leg, ... but I am hopeful for research and continuing advancements in treatments for these awful tumors. I’m also hopeful for a true love story where I feel loved unconditionally and truly taken care of by someone that isn’t related by blood.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I’d love to talk about how digital/social media has been an incredible tool for being able to cultivate a group of ppl with this rare ailment (or very similar ones) to relate to and cope with / Bone Tumor Awareness

What is the hardest and/or best lesson your condition has taught you?

I have to look out for #1 first and foremost, ... and that there isn’t an infallible/perfectly smart human (I.e. physicians) that get it right ALL THE TIME. you have to fight and be your own advocate to get the care you deserve. This has also taught me to control my finances!!! But that if you have a specific mentality I truly thing you can accomplish a lot with ‘thoughts’.

What is the best purchase under $100 that helped your life

My GRABBER! (Hilarious)

Any questions you think we should add to this list?

The story about how my condition was discovered / I’d love to put info out there for anyone that can be helpful or preventative

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