kakapeppar

A year and a half, more than 10 hospitalizations, 2 surgeries, countless missed life experiences. When I explain my illness to people and find out I am chronically ill, they have difficulty understanding the severity of my disease. Maybe because I appear quite "normal." I guess that sometimes it's a positive more than a negative, that I am allotted discretion as to who I decide to share my secret struggles and to what degree. But It's been only one year since my initial diagnosis, and one year before that that I felt like I lost important experiences in my life. Six months since my last surgery, and I'm trying to accept the truth, because I suppose there is no sense in hiding something so deeply responsible for the person I have become, and the person I will continue to grow to become.

I have Super Mesenteric Artery Syndrome (SMA) or Wilkie's Syndrome. I have Gastroparesis, too. In summary, with SMA; I have a rare digestive system disorder. The superior mesenteric artery provides blood to the small intestine, cecum, and colon. It crosses over the first part of the small intestine, called the duodenum. Symptoms occur when the artery obstructs the duodenum. Gastroparesis, also called delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine. It's condition in which your stomach cannot empty itself of food in a normal fashion.

Daily pain, nausea, inflammation, edemas, anemia, limited energy, lack of concentration, brain fog, easily susceptible to infections  (Add "extreme" to each symptom) But as some of you may know - it translates easily to:  I skip out on plans, lose friendships often, nap a lot, need to sit near the restroom when I travel on a plane, have to carry a purse not for lipstick but for medication and medical drinks, become extremely reserved and lack/lost the confidence I worked pretty well to achieve.

Like any life obstacle, what I've been through because of my disease, has of course, changed my personality, my outlook, my way of thinking, my physical appearance, pretty much my views on life entirely. I can't/don’t worry about the little things in life - that a normal/average 21 year old worries about. I can't/don’t focus on things I can no longer change because I have to realize that there are more important things I need to give my very limited energy to. My priorities have shifted from going out with friends, 21st birthday parties, girls nights out - to instead place my disease above all else, which - no shit -does absolutely not fare well socially.

Boys and girls that are twenty/twenty-one year olds have a difficulty understanding and sometimes(all the time) believing my excuses when I tell them I can't hang out because I'm too sick, too tired, hospitalized, or in too much pain even just to do the littlest of things. If I can get one point across to those who can't relate, it's that Wilkie's Syndrome and Gastroparesis affects every aspect of a patient's life. Trust me when I say this, that I understand that having a sick friend isn't fun when you're out doing whiskey shots and I'm sipping on Nutridrinks. I also understand how difficult it can be to find the right words to say when I tell you I'm in the hospital, waking up from a nasogastic suction, recovering from a surgery, missing classes, or rapidly losing weight because I can't keep anything down. I didn't chose these illnesses, but I'm trying to cope with it, and part of this is accepting the fact that my social life will suffer and never stop suffering.

But is it really what I need to do? On top of everything else, from medical tests, dietary restrictions, case studies to way too many hospital visits, I'm trying to realize that I shouldn't endure any more limitations than has already been inflicted on me directly by my diseases. My digestive organs are beating the crap out of me, literally and figuratively, every single day, twenty-four hours a day, and will do so for a long long time.

 I don't think I ask for much, from friends or family or acquaintances, out of my fear of being a burden, but I do ask that when dealing with someone who suffers from a chronic illness, you remember these few things:

Looks can be deceiving: SMA and Gastroparesis are an invisible illness, for the most part. For my case, I have lost an huge part of my weight and look quite skinny. I get negativity in people telling me I have bulimia, anorexia, doing it for the attention, blah blah blah.

We don't want negative attention: My intention when I tell people about my disease is for emotional support or out of the necessity if it relates to school or work. Never will I ever willingly want to tell people my situation for special attention/treatment.

I'm trying not to be embarrassed, so you shouldn't make me feel that way: I haven't fully come to terms with the idea that my body is failing me; that I feel like a defect. If you see me leaving at 8pm at a party, or sleeping an extreme amount of hours in the day when I tell you what I did today and the day before - trust me, I feel bad enough already so please do not make me feel worse than I already do. Acceptance is an extremely difficult part of having a disease - and i'll be honest that I haven't accepted it just yet - but is required not just for the person with an illness, but of others as well.

I don't intend on cancelling plans, it just happens: I'm 100% certain that anyone who knows me can testify to the fact that I have a tendency to cancel out on plans last minute. The unpredictable nature of my disease won't allow me to know which days I will feel great and which days I will feel like a I’ve got a bowling ball rolled on my abdomen while sleeping. Please don't give up so quickly and stop with the invitations because it still means a lot.

I still try do productive things: I've been travelling since I was very young so it's in my nature to always want to get on a plane here and there, work out every other day, do double spin classes. I can't do these things as often as I did, but for the most part, I still try to be a normal twenty year old. Life still has to go on with a chronic illness. Not all days are bad days.

I am knowledgeable and want nothing more to inform you: Over the short course of my time with Wilkie's Syndrome and Gastroparesis, I have spent uncountable days and weeks and months in bed. Thank goodness for the internet, and netflix, and youtube, because it's allowed me to put some time to good use by trying to understand my illness and researching anything and everything relating to what I have to understand it some more.