Website/Blog, Twitter, & Instagram Handle

Twitter @ashlee_hope98,

instagram @ashlee_hope

Name *Disorder Info

What is your disorder? *

Prior sudden cardiac arrest (cause unknown), scleroderma, hypothyroidism, migraines/cluster headaches, plus depression, anxiety, PTSD, and in diagnostic for ADHD

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

18

Who were you before your illness became debilitating? *

An athlete, top-level student, very active and fit

What would you do if you were not dealing with your disorder and/or disability? *

Basic exercise, writing things by hand, probably still be an athlete

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

I do not look disabled. People who see me would likely think I am just exaggerating when I say that I can’t take the stairs or I can’t go for a long walk. There are things people do every day that they take for granted that I can only do because of medical management.

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

I am fortunate to be mobile and rarely need occupational aids, but I do require elevator accessibility and seating availability because medical management can’t do everything.

Do you have any life hacks? *

Cursive instead of print. It’s faster so I can write more down before my hands give out.

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

My best friend is the most supportive person I have ever met. I’m also part of a support group for SCA survivors, both locally and internationally. My parents are supportive in helping me manage my health but aren’t entirely convinced that I can adopt the label disabled.

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

I haven’t had doctors outright not believe me, but I have had them push off some of my concerns as exaggerated or unnecessary. This happened with my electrophysiologist about my ability to get around campus, and with my rheumatologist about my back and knee pain.

How has your chronic illness affected your relationships? *

I haven’t had any romantic relationships since prior to becoming disabled but I have found myself becoming nervous about engaging with someone like that because I have a visible medical device under my skin, and my inability to engage in exercise makes me appear lazy and negligent of my health.

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

I really don’t talk about what happened to me with my parents at all. They are of the attitude that it happened and it’s over so I should let it go, but it still heavily impacts me.

What is your best coping mechanism? *

Therapy. I also have an ESA.

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

My biggest concern is being able to get affordable insurance once I am no longer on my parents’ plan. I am most hopeful about the direction the general opinion on healthcare seems to be going and that these things will become easier, if not universal.

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 specifically want to talk about the lack of psychological care for survivors of near-death conditions like SCA.

Any favorite books or shows?

I love Brooklyn 99.

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

I cannot do the things I could do before. I used to be athletic and active and I simply cannot be that person anymore.

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

Heated blanket.

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