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Spoonie Spotlight: AshleyJane

I am so incredibly excited to start this new feature! At least once a month – probably every 2 weeks – I will be using my platform to share the stories of other living with arthritis or an arthritis-related condition. The point is to share the realities of living with arthritis and to make others’ voices heard. If you would like to participate, fill out the form!

Spoonie Spotlight: AshleyJane

Meet AshleyJane!

What’s your diagnosis?


Lupus, Fibromyalgia, POTS


When were you diagnosed?


2005, last year of college


How long have you had symptoms?


since childhood


Have you been limited in any way from your illness? If so, how?


work, hobbies, travel


What’s your story?


As a child, I had chronic headaches and acheiness, but no idea I was sick.  My senior year of college, serious fatigue set in and I starting seeing specialists.  Over the past 9 years, doctors have settled on Lupus, Fibromyalgia, and POTS as my diagnosis.

Before the illness got serious, I use to have my own apartment in Washington, DC and worked in the US Senate as a Staff Assistant.  Today I am back in my home state of NH, dependent on others to pay rent (used to be my parents, now is my fiancé) and work extremely part-time as a Substitute Teacher.

Earlier this year I published a little Kindle book titled, “Living Incurably Despite Chronic Illness,” a compilation of the things I wish someone had told me when I first got sick. I also started a blog named “Living Incurably,” which has been really fun (and a lot of work, as I’m sure you know!) and connecting with other bloggers has been really motivating.


How has your illness changed your life?


my career pretty much disappeared and I had a lot of negative years before I got my feet back under me


What are your goals for the future? (Not related to your health)


Become a better writer, increase my blog readership, travel, save a nest egg, support my fiancé as he works a full-time job AND goes to college full-time nights and weekends, continue to have a fun and friendly relationship with my finance’s  daughter


What are your goals for the future? (Health related)


Increase physical strength and be able to substitute teach more often

Learn more about dysautonomia, does it actually apply to my condition, and will pursuing that diagnosis bring about any productive treatment?


Do you consider yourself handicapped or disabled? Why or why not?


I do consider myself disabled, mostly because I can’t support myself financially due to physical limitations.


What would you like readers to take from your experience?

My goal is for someone to read my sometimes rather blunt writing and take away one or two pieces of practical advice.  And have a couple laughs as well.

Find AshleyJane online

Thank you so much for participating, AshleyJane! If you would like to comment or to send her some words of encouragement, feel free to. However, if I feel that your comment is negative, I will remove it. There is enough of negativity in this world without adding to it!

If you would like to be featured in another Spoonie Spotlight, fill out this form. Oh, and use “happy holidays” to get 50% off all ads through Monday night!

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  • I love this feature Kate. I think it is a great idea to form a community for people who need it most. Thank you for sharing AshleyJane's story. I am going to check out her blog!!