Following on from the guest post by the lovely Pamela. I was inspired to shine the spotlight on as many illnesses and spoonies as I can. I want to keep the conversation of chronic illness and disability going and for everyone to get their story heard.
I compiled a list of questions that I thought would give people the chance to talk about their illness/disability and how their life is affected by it. Three people might all have fibromyalgia for example but all three of them might have a different list of symptoms and deal with it differently.
The first of this Shining A Spotlight On Chronic Illness Series is brought to you by Ashley. I’ll stop rambling on and hand you over to her.
Introduce yourself and tell us a bit about you?
My name is Ashley Cecere. I am a writer and aspiring patient advocate in the health and wellness community. I am known mostly for working full-time, going to school at night, and blogging.
Chronic illness(es)/disabilities I have?
Chronic migraine, chronic neuralgia, anxiety
My symptoms/condition began?
The crazy thing is that I can’t really remember. Everything was written off to anxiety. We began really working to find answers when I was about thirteen.
My diagnosis process was?
Long! I think we are still figuring things out. I was finally stamped with the “chronic migraine” label when I was about fourteen. That was the lowest hanging fruit because it was the easiest to verbalize, define, and treat.
The hardest part of living with my illness/disabilities?
I remain very optimistic and high-functioning. I am grateful that I am still able to work full-time. I am so lucky…but it is hard to convey that I am still in pain and still suffering from a chronic illness.
People assume that?
Because I work, I must not be that sick.
A typical day for me involves?
Getting out of bed at the last possible second, because it is not the easiest part of the day. Rushing to work. Work. I try to exercise after work, but that does not always happen. I am in class until 10pm twice a week. My husband works nights, so quite often, I come home to an empty house.
The one thing I cannot live without is?
Being ill/disabled has taught me?
I am now very careful what assumptions I make about people that I do not know very well. I do not advertise my own illness (well, except for my blog about my illness…) so I can’t know what others are coping with.
What advice would I give someone recently diagnosed?
Find a support system. If your family isn’t supportive, that is very difficult and my heart goes out to you. It is even more critical to find a support system if you do not have a support system at home. Facebook is often a good place to start or even Meetup.
My support system is?
The Chronic Illness Blogging community, various Facebook groups centered around the disease or specific treatments.
If I had one day symptom/disability free I would?
ANYTHING that my husband wants. I would take him to any museum, go on any road trip, or do anything. My illness stops us pretty often from doing things like that.
One positive of having a chronic illness/disability is?
I have been given the gift of empathy and it helps me tremendously when trying to relate with others.
The spoonie/disability community has been?
Very welcoming and supportive!
Thank you so much to Ashley. I really enjoyed reading your answers and getting to know how you cope with chronic illness.
If anyone is interested in sharing their story of chronic illness or disability. Drop me an email & I will be happy to send forward the details to you. firstname.lastname@example.org