Through my social media and “Fibromyalgia, Recreated” on my site, I try to focus on making Fibromyalgia more visible. Because it’s an invisible illness there can be shame felt by those of us living with it. We don’t “look sick”. Sharing my experiences, journey to acceptance, and daily struggle to stay confident in myself despite how others may see me, will hopefully help others.
I was very lucky to be approached by the team at Voyage Chicago this Spring. Being able to speak my truth and help inform their audience about life and career with Fibromyalgia was such an honor. We #Spoonies have many challenges that others without a lifelong chronic illness just don’t. Unlike people in wheelchairs, our disability is invisible. As a community, I feel we can work together to make it visible by sharing our stories. Yes, it’s scary. Yes, it’s difficult to be vulnerable especially when many of us have faced discrimination throughout our struggle with this illness. But yes, it will get easier the more the public learns about our limitations AND our abilities.
To read the full interview click HERE.
The way we do things will inevitably look different from the way our healthier counter-parts. However, different doesn’t mean bad. It often means creative. Those of us with this illness are quite resourceful and ingenious when it comes to finding our way to walk through this world. No, we can’t do it in beautiful 6″ heels. Maybe instead we stroll in sensible sneakers and stop a few times along the way to rest. THAT’S OK!
Showing up to a nieces’s volleyball game is a success. Having to go home and lie down after rather than out for her victory dinner IS OK! We recognize that when we manage to show up it’s a sign of our deepest desire to be there. We often have to make tough choices about what we get to do given our bodies won’t let us do it all.
Preparing food for our friends, families, and selves may consist of preparing 90% of it in advance when we have small breaks from our fatigue. THAT’S OK! What matters is that we try to get something on the table.
A good number of my recipes have a “Make-Ahead” component because preparing for Fibro Flares is a large part of coping with my illness. I find the same tricks that help me also work for busy moms, professionals working long hours, and foodies with too much on their plates… pun intended.
We don’t have to give up our dreams because we were dealt the hand of Fibromyalgia. We can reach into that deck and pull out an Ace. It may take a few tries, but if we think outside of the box (excuse the mixed metaphors), we can decide what is a winning hand.
It is possible to find another path to our career goals. The road we walk down may not look like the one taken by those around us. But, by accepting that our illness requires us to do things differently, we open the gates to new pathways leading us to a life we are happy to live.
I hope that in still doing what I love, however differently from others, I can inspire those with chronic illnesses to go forward with their dreams. Our path to achievement may be longer, slower, and dotted with more setbacks than we’d prefer, but it doesn’t mean we can’t be successful.
Success is creating something every day even if it sucks. It’s about making the effort, being active in one’s passion and working to share that passion with a world that can revel in it. Some days I feel successful when I look at how I’ve made the most of my time moving around the country. Other days I feel as though my Fibromyalgia is stifling me.
In the end, I think I’ll feel successful if I’ve helped one person to be less anxious about food, eat healthier in a less restrictive way, or accept that we all have to work around our obstacles. But, it can be done!