but I don't look Sick
Last month I “celebrated” a milestone: 8 years since my diagnosis of Relapse Remitting Multiple Sclerosis. Celebrated is not the best term… but a milestone never-the-less.
In April of 2011 I was diagnosed with Relapse Remitting Multiple Sclerosis, or RRMS. About 6 months of unexplained symptoms lead up to the ER visit that lead to my diagnosis. I would consider myself one of the lucky ones – some go years or decades without finding their diagnosis. (See Selma Blair or Art Alexakis)
Sharing my story back in 2011 looked like a note on my Facebook page in which I was able to share and tag close family and friends. At the time I was not driving or walking very well and retelling the story seemed too difficult to face. The post was intended to get out the information to people that were asking about how I was doing in a more concise manner. I was honestly tired of having to repeat the story and the sad looks when people didn’t really understand what MS is and thought I’d received a terminal diagnosis. It was also helpful for me to feel as though I had a bit of agency in who and how my story was getting out into the world.
As Facebook does, the story popped up in my memories to friends that were originally tagged in the post. I didn’t remember all of it; the lesions that are on my brain and spine cause me to forget chronologically how things happen – like waking up from a dream into another dream without knowing how you got there… but in your own life; it’s really fun *insert eye roll*.
It can be quite frustrating and difficult to explain. And you may have told me something a few dozen times, and I’ll still have to ask how to get to a place, or how to do something I may have done 50 times before. But I’ll still ask again to give help me get that memory a kickstart – I know it’s frustrating for you, but it isn’t all that fun for me either. I’ve learned patience with myself and others; I especially try not to lose my patience with either because I believe we are all doing the best we can. Sometimes it just takes a bit more effort – and that’s OK.
These days, I don’t “look sick” (whatever that means), but every six months I visit the DMC MS Clinic to participate in the continuation or open label study for Ocrevus. I was fortunate enough to find a wonderful neurologist who was teaching, doing research, and interested in really helping patients with MS. After unsuccessfully trying Avonex and Copaxone for several months each, I was enrolled in the MS Clinic Ocrevus trail since 2012. I am so grateful for the now FDA-approved medication through the clinical trial I continue to participate in – and will do so until they tell me I can’t.
These meds are ‘spensive y’all!
Finding these kinds of programs didn’t just happen or land in my lap, though. Advocating for my care as a patient has made all the difference in the world. I have sought out the best care for me in my health network. I met with 5 or more Neurologists between 2011 and 2012 and countless Primary Care Physicians before finding the medical team I currently have.
I am passionate about helping other people become their own advocate – we are worth it! Our health is worth fighting for and being an informed patient to participate in our own healthcare. When you really listen to your body (your intuition) it’s telling you something; learn to listen to it and take an active role in your health. Have patience with yourself and in your choices with your healthcare team. Not all doctors or specialists are going to be a good fit.
I do recognize the privilege that comes with this perspective – there were a good number of years that I was unemployed and underemployed without health insurance. I would still implore you to seek out care to take care of the ONE body you have even if all the parts and pieces are ones you’d like to return 😉
In cultivating my physical healthcare, I found my personal care and well-being lacking. I was fortunate enough to stumble upon Ursula’s career coaching page a little over a year ago. She and the women at the SheHive have taught me so much about personal and professional self-care – I cannot even begin to tell you here! I now know and love so many women from the many groups and classes I’ve participated in: Writing Group, But You Don’t Look Sick Support Group, F*ckery!, Listening to your Intuition, Orientation at the SheHive, Pivot, Love U Too, Life on the Other Side of Should podcast, and so many more!
I invite you to check out the Orientation to see what the hype is all about – most of the people I see there love the warm and inviting “club house” where no topic is off limits and you can give as much or a little as you are comfortable with. It really and truly is a place to become the best version of who you are and belong with a tribe of supportive women who lift as they climb.
I feel about as “normal” as anyone, but I love that Ursula has created this place where we can connect with women who share their experience and expertise so generously. I am always curious how I can help others see their greatness as this group of women has helped me to see so much of my own ❤
5/10/2019 09:44:41 am
Carly you are such a bright light and hold beautiful space for those around you. Thank you for sharing
5/15/2019 09:01:32 pm
Carly thank you for sharing your story. You are one of the strongest women I know, I'm grateful you are in my life. Gentle hugs
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