Last week, after a neurologist denied me treatment because I “looked normal”, I was abruptly reminded of the responsibility I have to myself and to the ME community to be more transparent in hopes of getting this invisible illness the justice it deserves.
I’m between constantly trying to prove to myself (and the world) what I can do, and staying within the boundaries of what my health/body allows me to do. Just like every other person, I’m excited to see what I’m capable of. I am a second year student at the University of Cincinnati. I have found my passion in running an organization (Sara Spins) that has helped individuals pursue their education despite their ability, including myself, and has helped to spark a disABILITY awareness movement on campus. I am advocating for equal opportunity and inclusiveness at UC, and overall social justice for all persons with disabilities.
Unlike every other person, I live a very disciplined, isolating lifestyle that revolves around my health. I have Myalgic Encephalomyelitis (ME) which has caused Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome (CFS), Post Exertional Malaise, Peripheral Neuropathy, Interstitial Cystitis (IC), Endometriosis, Celiac disease, and if I listed the rest of my diagnoses you’d think I’m kidding. These are my main concerns…. besides like, being a financially struggling teenage activist in college.
I’m also teetering on the very dangerous edge of a relapse. A relapse happens when I push myself so hard that my body just pushes back by shutting down completely. The last time I relapsed, I became dependent on a wheelchair with severe increase in pain and neuropathy after weeks spent in bed. I don’t know if I would come out of another relapse, or what that would mean for me long term.
Every day is a constant FIGHT. It’s a very real struggle for me to “function”. It truly feels like my body was not made for this world. On my good days, I can get dressed, maybe do my hair and makeup, wheel myself up the hill to catch the shuttle, make it to my few hours of classes and maneuver around on campus. By the time my classes are over, I usually have a headache or severe brain fog, and can find it hard to even hold a pen or text on my phone. People recognize me on campus because of my wheelchair, and I often find my anxiety/exhaustion by the end of the day makes it almost impossible for me to hold a conversation. I do my best to participate in these moments of the (small) social life I desperately crave, but meetings and social encounters are also very draining to both my cognitive and physical functions. Thankfully, if I’m not in too much pain, a nap after classes usually allows me to work on a few hours of homework, simple house chores, or to read or watch Netflix or a movie. I don't like to watch TV because my brain can’t handle the loud, over-stimulating commercials. I usually try to rest enough to be sure I can make myself something (gluten free and vegan) for dinner, and I always make sure to clean up after myself. I try to stretch everyday, and if I don’t have class or a meeting, I will go to my yoga studio to do some basic yoga or receive treatment such as acupuncture or massage. By the end of the “day” (12 hours tops), I often find myself in tears from the pain until I fall asleep, given my insomnia isn’t bad that evening.
On my bad days, I can’t get out of bed (for up to days at a time). I physically don’t have the ability or energy to push myself in my wheelchair, let alone try to stay awake and alert enough for classes. If I’m lucky, I’ll have an hour or two to do some work from my bed, but that will usually leave me extremely nauseous and even more fatigued. These times spent down are extremely hard on me emotionally, because I am terrified of becoming bed-ridden again. I’ve spent a good part of my life stuck in bed with myself, and I have to say I like myself a lot more when I don’t feel so helpless, and when I have a lot more spoons to spare.
Most people don’t know why I’m in a wheelchair, or that I have ME. Most people don’t know what ME is, and I haven’t been doing a very good job of “showing it”. Even my best friends and family don’t always understand or overestimate my capacity. Because of my own pride and stubbornness, I try really hard not to complain about how I'm feeling on a daily basis or share when I feel so completely brain fogged that I can't even spell my own name. In my position at UC, I've also learned that (unfortunately) the easiest way to get rid of the awful prejudice and stigma associated with disabilities is proving to others that we are just as capable or able (they call it "Murderball" for a reason). While I am not physically able to participate in these wheelchair sports or other, I continue to support these initiatives at the cost of sometimes ignoring the invisible illness aspect, because I alone do not represent the entire disabled community.
I am not always the outgoing, always-smiling “Sara Spins Sara”. I am struggling. I am sick. I am terrified of getting worse, and I am even more terrified of not doing enough. I am embarrassed I can’t do everything I want to do and that I see my peers able to do. I wish I could seek out every opportunity offered to me at UC, and follow through with every invitation from a new friend. I wish I didn’t feel so isolated, and it is devastating when the physical pain completely consumes me. I'm also struggling with my sense of identity, because I'm human, I'm 19, and I am not where I want to be with my health. I honestly miss
the person I was before running, and I am embarrassed of my inabilities. I’m sorry I’ve been absent from this blog, but I
hope to use this as a resource to express the actual reality of
what I’m going through. I have ME, I am doing the best I can, and this is nothing
to hide. Someone once told me, “You are only as sick as the
secrets you keep”, so this is how I will beat the shame, guilt and fear that
come with having an invisible illness.
I have lost a lot of function, ability, and time because of ME. I have also been introduced to worlds I would not have been otherwise, and have been given an opportunity for my unique voice to be heard. At times I feel like I’ve bitten off way more than I could ever chew, but at the same time it is this “appetite” for life that keeps me motivated. I am thankful for the ability to share my story, and I promise to be honest and fearless in any/all posts I make on this blog.
If you are reading this, I hope you don't feel pity or sorrow for me, but instead have found a desire to join me in my fight for the quality of life I feel myself and so many others suffering from ME or a living with a disability deserve. I have found the most powerful thing I can do is to be completely vulnerable and honest with another person (or the entire internet), and provide a space in my heart for them to do the same. We are all going through something.
I know I am not enough to change the world, but who knows what WE could change. Let's find out.
Ways to help me right now:
Do you use social media? Support Sara Spins, follow us on twitter, and "like" us on Facebook! Help break down the physical and social barriers for people with disabilities! Consider a donation or holding a fundraiser to raise money for Taylor, so that we can get her motorized wheels to her before Christmas! Also, check out Canary in a Coal Mine's kickstarter or their Facebook and follow and support their outstanding efforts to make a documentary on ME!
Do you go to UC? We need a more equal and inclusive environment for people with disabilities. I hope to see structural changes made to campus, as well as the addition of disability-related classes and (at least) a possible minor in these studies. Any and all student events and organizations related to activism and diversity is extremely beneficial to this cause! Also, if you see me on campus, say hello! I like hugs. Just excuse my potential brain fog!
Do you shower? Consider supporting my growing Arbonne business! Why Arbonne? Arbonne is a high-quality, environmentally conscious vegan company that formulates all their skincare, makeup, and wellness products without gluten! I love every single thing I've tried (I credit the yummy protein powder for keeping me alive). You can easily do some of your holiday shopping online at Arbonne.com. My Consultant ID is 13800233. If you don't think Arbonne is for you, sharing my video or reaching out to a friend who might be interested can also help me in my efforts. Along with developing a better sense of confidence and self, I hope this will allow me to meet my medical financial needs that aren't covered by insurance. I have incredible respect for the company and the women on and leading my team. I'm grateful for Arbonne because it is something no illness or disability can take away.
I am extremely open to any questions, suggestions or comments.
Feel free to contact me directly or leave a note below. HUGS!