Spoonie Spotlight is my way to use my platform to share the stories of others 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. (New posts every 2 weeks.) If you would like to participate, fill out the form!
What’s your diagnosis?
Fibromyalgia (Also anxiety/depression)
When were you diagnosed?
About 2 years ago in October, first semester of college
How long have you had symptoms?
probably 4 or 5 years.
Have you been limited in any way from your illness? If so, how?
Yes; socially, academically, physically, and emotionally.
What’s your story?
I was diagnosed with Fibromyalgia my within the first 3 months of college, which I believe was the catalyst for my symptoms. Like most Spoonies, my whole word was turned upside down, suddenly the symptoms I could not explain had a word, and new ones started cropping up. While trying to adjust to college life, being away from home for the first time, I had suddenly gained a new identity, and new challenges. I am going to be part of a peer-health educator program at my college this fall, to be trained as a liaison between the student body and health services department. I will be certified to run programming on something related to health, and I am choosing to raise awareness about chronic illnesses like Firomyalgia and other similar conditions. Despite my illness I still work as a babysitter, participated in Student Senate and continue to try and push through. I am pursuing my masters in Education as part of a 5-year program at my college.
I will admit I am uncertain and afraid of what lies ahead for me, there are many unknowns, and many things I have not had to confront yet. I feel blessed at times knowing that my health could be worse, but also am hopeful for more research and more awareness to make my life, and the life of my fellow fibromyalgia fighters, easier and brighter.
How has your illness changed your life?
It has made me more introspective, more in-tune to what I need both emotionally and health-wise, and given me a renewed sense of compassion.
What are your goals for the future? (Not related to your health)
This year I want to raise awareness about chronic illness, serve again on student senate, explore more of NYC that my college is located near, travel to London.
I want to have a family, earn my masters, and find fulfillment in doing a job that I love, whatever it is.
What are your goals for the future? (Health related)
I want to be able to exercise without immense pain. I want to be able to clean my living space without it being a totally exhausting ordeal. I want to be able to travel. I want say goodbye to debilitating headaches and sharp stabbing pains that disrupt my sleep. And I want to be able to live the life I have always dreamed about, recognizing that it might look a little differently that I originally imagined it.
Do you consider yourself handicapped or disabled? Why or why not?
I struggle very much with this question. When I was younger I attended a Quaker friends school, where there were about two kids per class who had various special needs, and many were physically handicapped. My grandmother has Parkinson’s disease. So I have been around people with disabilities that are often more severe that mine my whole life, so to call myself handicapped or disabled seems strange and untrue. I think that I push myself too hard sometimes, and refuse to accept help I need because there is something I believe I should be able to do. I prefer to think of myself as dealing with challenges to my mobility and lifestyle, rather than perhaps taking away services for those who often visibly need them more. I believe that those with chronic illness who do not use a mobility aid often have an added layer of self consciousness around their ‘invisible’ disability; at least in my experience.
What would you like readers to take from your experience?
It is important to give yourself time and space to grieve for the life you do not have, otherwise how will you revel in the wonderful life you do have. However tough things may seem, there is path through, you just may have to look a little harder. It is difficult, but vital, to find the humor in your illness, even when it seems all doom and gloom. And most importantly of all, take care of yourself, but don’t wear yourself even more stressing over it. It doesn’t matter if you can lift 50 pounds or barely 1, you are strong and capable, and anyone who judges you or thinks differently doesn’t matter.
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