16. What is your support system like? My family is my rock. My mom is my confidant. My dad is my hero and protector. My brother and sister-in-law are always by my side. My Grandmom is my number one fan. My church family keeps me going spiritually and mentally, which in return keeps me going physically.
17. Do you think EDS is “expensive”? I actually laughed out loud at this question…EDS is NOT cheap!! I could think of a lot more fun ways to spend my money.
18. Do you consider yourself disabled? Yes, this disease does currently prevent me from working or going to school.
19. Have you ever experienced ableism? Ableism is “discrimination in favor of able-bodied people.” Yes, almost daily. I try and ignore the struggles I face when I take Magnolia out or park in handicap designated spots and receive comments on how I don’t need a service dog or that I “don’t look disabled.” You’d also be amazed at how inaccessible the world is when you’re in a wheelchair.
20. Worst part of EDS? Watching people take for granted the things you can only dream of getting to do.
21. One thing EDS has taken from you? Having the freedom to be “young and dumb.” I don’t have the luxury of just jumping in the car and going somewhere…traveling, even a day trip, takes me days, even weeks to plan. Not that I’ve ever been interested in it, but I could never go and get drunk. Drinking would interfere with my medicines and autonomic issues. I can’t stay up late watching Netflix and expect my body to function the next day. I can’t go and play sports, run or exercise like my heart desires. My dating standards are very different than any 21 year old I know. I have to plan everything I do. I have to call and show up early to ensure I have the proper accommodations anywhere I go.
22. One thing EDS has given you? EDS has given me empathy and concern for everyone around me. I’m not perfect, but it’s almost against my nature to judge what someone’s doing or how they are behaving. I’ve been the person that shows up 30 minutes late to the hangout because getting ready took more out of me than I was expecting. I am definitely the 21 year old that takes the open seat in public, even if there are adults around. I’ve been the crazy dressed person in Walgreen’s barely standing just trying to get out of the house for a few minutes. I’ve been the angry/rude person for no apparent reason on my high pain days. I’ve been the person that hogs the public bathroom for seemingly no good reason, but in reality because I was really sick. I’m the funny looking girl that will sit down in the middle of Target and lay down so that I don’t pass out. EDS has put me in a lot of awkward scenarios that makes the average onlooker think I’m downright crazy or just plain weird. I don’t like to be that person, but sometimes that is me. So, when I see the lady at the grocery store with greasy hair, sweats, stained shirt and slippers, I smile and say a little prayer, because I’ve been there. EDS has changed the way I look at people and the way I love them. This is a priceless gift that EDS has given me.
23. Something you wish everyone understood? I’m sick! Shocking I know, but I wish more people could understand that it’s true. I don’t have any plans to die anytime soon, but nevertheless I am sick and I will be sick until the day I die. (Unless God wants to heal me this side of heaven) When I cancel our plans or refuse to make plans with you for a couple weeks out, it’s not you and it’s not me either. I am sick and sickness has no rules, so I promise my heart is in the right place but I live day to day, moment by moment. When you see me and I don’t have Magnolia with me and I’m dressed up, have makeup on or whatever it is, I am still sick. Also, I am not ashamed to be sick. I’m also not ashamed to say that sickness is a part of who I am. My identity will forever and always be in my Lord and Savior, but EDS is a part of me.
24. If you could rid yourself of one EDS symptom, which would it be? My initial reaction is ohhh, ummm, well, uhhhhhh…I mean if we’re going to rid of one thing, might as well rid it all! Am I right? But, if I have to pick just one thing, can I just say pain? Get rid of the pain!! All of it!! I don’t remember a day, an hour, a minute, even a second that I wasn’t in some type of pain.
25. One person you’re grateful for? There’s so many people I’m grateful for…the first two people that come to my mind are my mom and dad. My mom is my best friend, my comforter, my sounding board, my tear wiper, my hand holder and my angel by my side. My dad is my rock, my motivator, my best friend, my constant, my protector and my hero.
26. Scariest part of your future with EDS? This is going to sound very strange and maybe even a little crazy to most people, but the truth is I think I was 12 when I first said, “I wish I had cancer.” Please here me when I say why and don’t take it for anything more than my given reason why. Cancer usually has a timeline and usually a given “guidelines” of what will happen within the given timeline. EDS is far from having any guidelines or timelines. The disease in theory should not kill you, but it causes a lot of comorbidities that can be…intense. Our comorbidities often come with implanted devices such as: feeding tubes, ports, joint implants/replacements, and many other things. There are risk with everything anybody ever does, but when you start adding things inside your body or ingesting medicines, having surgeries, you add to your risk factor. I am not scared to die one day. I know where I’m going and I look forward to that day. But, until then I want to live the best life I can and I don’t like surprises. So, sometimes I do tell myself “I wish I had cancer,” but only because I wish the fight ahead of me came with a timeline and guidelines. In essence, I’m nervous for the unknown that comes with EDS.
27. What are your health goals? I want to get to a place where I am stable enough to be able to maintain a regular schedule…aka go to school or get a job.
28. Have you ever met someone else with EDS in person? Yes! I feel extremely grateful to have gone to some of the best EDS physicians in the world and when you are in their clinics it is inevitable to meet a fellow EDS warrior. I am also a part of the Kansas City EDS support group and help with the young adults EDS group for Kansas City as well. I have lots of EDS friends online, but I am also blessed to be around quite a few zebras (EDS nickname/mascot) here in Kansas City. We are actually in full planning mode for the Kansas City EDS Conference in September. The conference will give me a chance to be around over 300 zebras and hangout with some young adults fighting EDS as well.
29. If there was a cure for EDS would you take it? deep breath This is a hard question. I know most people who are chronically ill do not like to say their identity is in their illness, but I am going to venture out and say that if there was a cure or if God healed someone on this side of heaven, most chronically ill people would not know what to do. EDS is genetic, meaning I have had this disease since I was born. Aka I don’t know a life without EDS. I want to say I would take the cure and honestly I probably would, but it would be very scary for me. Most people are scared to get sick. I’m scared to be healed. That would be a whole new world for me. So, yes I would take the cure or the healing, but it would be a major struggle to adapt. Think of a soldier…They don’t want to be at war/fighting. When they are at war, they wish they could be at home with their families. When they come home, there is a transition phase that is sometimes very hard for them to navigate. They’ve always been called a soldier, been a soldier, acted like a soldier, but they come home and now they are a civilian and are expected to be called a civilian, be a civilian, and act like a civilian. A lot of soldiers struggle with this transition. I imagine my healing would in someways resemble this transition. (I am in no way calling myself a soldier)
30. How do make your invisible illness visible? I talk about it. I talk about it on social media, in person, in videos, on blogs and anywhere I am. My illness is invisible, but I am not and I want that to be known and heard. I love questions, comments and any other way people want to interact with me and learn about EDS, chronic illness and ultimately learn about overcoming.
31. What does awareness mean to you? Personally awareness to me boils down to bringing glory to God. I don’t want attention, matter of fact, I am an introvert and pretty happy keeping to myself. But, what a waste of a testimony of the goodness of God, the nearness of a savior, the faithfulness and pursuit of a friend who is closer and more real than the breath in my lungs. I bring awareness to the disease that runs rampant in my body, because it is in my pain and struggles that I find out who my God is and who He has created me to be. It’s too good and too important to keep to myself, the world needs to know. So, while I have breath in my lungs I will tell of His goodness and His mercy for anyone and everyone to hear. That is what awareness means to me.
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