It’s Dysautonomia Awareness Month!
Enter CeCe Collins, one of the strongest and most intelligent people I know. CeCe lives with multiple chronic illnesses including Ehlers-Danlos Syndrome, Sjogrens, and Dysautonomia. She does a lot of her own research to manage her illnesses.
(This is a LONG, but VERY GOOD read that I’m breaking up into parts)
Q: How have you grown as a person through your struggles? What insights have you come across about what it means to be a human?
That is a really great question. I have grown as a person immensely since being sick. I think the best thing that this whole experience has given me is resiliency. It took a really long time. For awhile I was really bitter and as things were developing it was extremely hard because my brain wouldn’t give up the whole “when you’re better…”. I think I was waiting for that “get better” or “get back to normal” moment for so long because I wasn’t able to accept the fact that my old self had come and gone.
It’s silly really because if you think about it, you never go “back to normal” after any major life change. The past is gone and unless you repeated the same day over and over again, which would be quite boring honestly, no one nowhere will ever be the same person they were yesterday.
It just took awhile for me to work through that. There are a lot of layers (in most if not all) in a chronic illness patient’s journey from the start of their first symptoms to actually being diagnosed and then to actually getting treatment and finding the right treatment.
The earlier layers of my chronic illness journey still hold a lot of pain for me. That first 6 months, which was summer + first semester of Senior year at Hendrix, I was extremely sick and there was ONE doctor, ONE single doctor that believed me. Every specialist or second opinion literally told me I was crazy. If they didn’t tell me the first visit, they would tell me the second visit after all the 10 or so tests they ordered came back negative. Half of my family also believed I was crazy. I am so lucky that my boyfriend Luke stuck by me the whole time and never ONCE doubted me. Literally not once. And my mom. My superwoman mom. She was my biggest advocate. One day, after a doctor’s appointment where yet again they asked “are you sure this isn’t psychosomatic?” we got home and I was just sobbing on my parents couch.
I told my mom that I was afraid I was going to die because no one cared enough to actually help find out what is wrong with me.
That was my rock bottom. I was terrified, but too sick to fight. I could almost see myself wasting away for another year while doctors continued to tell me it was psychological because I was in college, had stress, and of course was “a young woman who was clearly high maintenance and wanting attention from someone in her life very badly.” I can’t imagine what it would have been like if my mom and Luke actually listened to those asshat doctors, the ones who seemed to drown out the rest insisting I was mentally unstable. I don’t know that I could have made it if I was 100% on my own, with everyone doubting me. I felt a hopelessness and a loneliness that I hope no one ever has to feel and that I don’t have to feel ever again, but this is where I draw my strength in newfound resiliency now.
On a plane heading to the Dysautonomia International Conference in DC!! Chronic illness power couple? Yes. Yes we are. . . . . #getyoursicktogether #chronicillness #powercouple #pots #sjogrenssyndrome #sickchick #mastcellactivationdisorder #breatheclean ##ehlersdanlossyndrome #chronicallyawesome #chronicallyfabulous #dysautonomia #dysconf2017 #noeyebrows #thanksalopecia #boyfriendhasbetterbrowsthanme
Four years later, I am still sick and not even really getting better, but I am able to adapt and keep fighting, keep advocating for myself and other patients like me, because of the beautiful resiliency that was formed when I had no hope, no answers, and no sight of my future.
Sometimes my health complications are relentless. The reality is that my health right now is more unpredictable and worsening every day as I am not being treated aggressively for my aggressive autoimmune disease. When I remember the beginning of all of this, I still look back at myself as so much sicker while I was at Mayo. I was in a wheelchair, unable to walk, getting test after test, waiting for someone to help me, to give me answers, to believe that my pain was real. The funny thing is, although I was pretty damn sick then, my health is actually worse currently because that is the nature of chronic illness. I am still not under treatment. Most of my existence at this moment revolves around my illnesses and my physical symptoms. Almost every single day is a pain day, a headache day, a nausea and vomiting day, a shaking tremors and chills day, a burning body day, a not able to get my body to stay at the right temperature day, a bone tired can’t even keep my eyes open day, a full body hives day, a too weak to walk without assistance day…my everyday life has changed so much it is hard to grasp sometimes. When I feel exasperated like that, I know I am slipping into a downward spiral of fear and negativity. At times like those, I like to allow myself to think back to the beginning of my story and it is always hard. My throat tightens as the memory of hopelessness wells up in my throat.
But then I remember the rest of my story, where hopelessness soon turned into hope and safety because I didn’t give up. We didn’t give up and we did do whatever it took to find answers for me. And now, I realize that I am the person I am today because of my chronic illness and that is fine with me. My story can’t be written without the story of how I got sick. It just can’t.
The way I think about everything has dramatically changed. I wouldn’t be able to see the things that I see, to think the things that I do, to feel the way that I feel, to love the way that I love, if I had not become sick. Sometimes I make a little joke about the positive side of having a chronic illness. People will ask me how I stay positive and remain hopeful and I’ll say, “Honestly, if anyone could’ve gotten as sick as I was, I am glad it was me. I can handle this. I know I will make it through this. I know that I am a better person because of this. And I know that I will be able to help so many other patients along the way. Being Chronically Ill has surprisingly given me a sense of purpose that I never had before. It seems to have permanently settled my feelings of restless uncertainty and anxiety about what I was going to do with my life. I now know that I can do anything. But what I want to do is embrace the fact that I am sick with chronic illness, that I shouldn’t be ashamed of the fact that I am sick and likely will be for my future.
Yes, I am the sick girl, a sick chick, always at the doctor, frequently in the hospital. I know that it makes almost everyone else really uncomfortable, but I refuse to just sit back and hide a large part of who I am.
I am a chronic illness patient and I will talk about being sick out loud and in public. I will share the good, the bad, and the ugly. I will share my story and advocate for more research, more funding, more treatment options in the hopes that I can make another chronic illness patient’s journey a little bit easier and a little bit more comfortable. I am here to prove that having invisible chronic illnesses is like a superpower.
As a chronic illness patient, you are stronger, more resilient, more beautiful, more vibrant and full of life, more extraordinary all due to the fact that you are still ticking on through all of it.
It can be hard to remember to have a sense of humor when you’re at the doctor for the billionth time. Luckily I have Luke who’s sense of humor and creative side can’t be turned off so, here I am balancing dinosaurs & horses on my body ? I don’t know what I would have done for 3 hours by myself after i got my first Xolair injection this week. No reactions which is huge as this is hopefully going to help reduce my mast cell symptoms that are causing me near anaphylactic reactions and chronic hives. Fingers crossed ?? . . . . . #chronicillness #invisibleillness #eds #pots #sjogrenssyndrome #mastcellactivationdisorder #allergist #findingthejoy #xolair #laughterismedicine #getyoursicktogether #chronicallyfabulous #chronicbabe #sickchick #doctorsoffice #healthyhumor
When I was a kid, I remember watching goofy Disney movies on Friday nights where weird, supernatural or magical things would happen to the kids. Do you know what I am talking about? How like the kids will have tiny little friends living in the cabinets or they will be friends with a ghost, or they will have superpowers, or will have gone to the middle of the earth on some insane quest, that kind of thing.
Half of these movies the parents don’t have very big roles but in some, near the end once the magical mysterious middle of the film is wrapping to a close and the kid or kids are back in reality at their houses or something, they always look at their parents and say something like “would you believe me if I told you that I wasn’t lost today, I was actually on a spaceship saving the planet?” And usually the mom or dad says, “honey of course I believe you. I will always believe you, remember that.” Or something cheesy like that. So, when I was little I would ask my mom ALL the time. I would say things like “mom, even if I tell you when I am older that I am a superhero or I see ghosts or something like that, you would believe me right? If anything happened that was hard to prove, you would still believe me? Right?” And she would always say, “Of course I will believe you. I believe in you and I will always believe your side of the story.” And she did.
She never doubted that my symptoms were real. She fought for me because I couldn’t.
She hauled me to the Mayo Clinic and left her other kids and husband to spend Christmas and New Years in a Holiday Inn with Luke, Ruca, and I because she believed me. And it was because of her determination to keep looking for answers that I did get answers. I am really thankful to my mom. I have truly learned to appreciate my family and my friends and people in my life who value my reality as a patient with Chronic Illness.
That’s it for now. Read Part 4 next week!
CeCe Collins is a full-time chronic illness fighter living in Austin, TX. She shares raw photos of her day-to-day life on social media in order to help, inspire, and advocate for others. You can follow her on instagram @cece_getyoursicktogether or read her upcoming blog & vlog, Get Your Sick Together. You can follow her service dog Ruca on instagram at @right_hand_ruca.
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Photo Credit: CeCe Collins