a diagnosis can('t) define my life

As a lupus patient , i can't spend a lot of time in the sun because it causes my antinuclear antibodies to act up. Essentially, Lupus is a disease where your body becomes allergic to itself, causing chronic organ rejection and inflammation of my organs, skin, muscles, and arteries, and being in the sun makes the body think there is an intruder. if i spend 30 minutes to an hour in the sun i will end up spending a few days with stomach flu symptoms and respiratory decline. People consider Lupus an "invisible illness" because it is hard to tell if you have an autoimmune disease by looking at somebody. often times i will have a red rash that spreads across my nose and over my cheeks. it burns and itches like poison ivy. When i was a kid i loved spending time outside, there were specific tress in the woods behind my childhood home that i would sit and read books for hours. being inside made me feel trapped, it felt unnatural. now that summer is my immune systems enemy, i have to find peace elsewhere. I've hung fairy lights, pictures, posters, and a collage of photos in my bedroom. i have dark curtains over my window to block the light, but i open the window for fresh air. its fall, and there is mostly cloudy weather, so going outside is not a danger as much, but with the chill in the air my joints are swelling and my sinuses are pounding with pain. My boyfriend Matt has been pushing me to the library in my wheel chair to help me get a change of scenery. Having an illness certainly changed my life, but it hasn't made it worse. as i have written before, its hard to find peace when your happy place is unaccessible. learning to be a person of hope after a big change like becoming ill is difficult, but i think if i hold to my passions and values it will not be hard to remain the same person i was, just with different challenges.

im told illness and happiness are not mutually exclusive

i have been told this my whole life, thats about how long i have been sick with one thing or another. weather it was therapists trying to convince me to speak, doctors drugging me out of panic attacks with benzodiazepines or being slid in and out of MRIs and PET scans, people try to tell me i have an equal shot at being happy as anyone else. but what they didn't tell me, what they couldn't, was that when you are sick happiness means something different. i used to love walking, i walked everywhere. i would walk just for the sae of walking. it helped me think it made me a better writer. but now i can barley walk a block with out extreme pain or passing out from low blood pressure. it took me a long time to realize that you have to be happy because you are, not because you should be. i find that there are 2 main reactions when people find out about my illnesses: 1) they are convinced i should be utterly depressed or 2) they tell me i should be happy i'm not dead. before i was diagnosed with my first major illness, POTS (Postural Orthostatic Tachycardia syndrome) i WAS depressed. i was on 3 antidepressants 1 mood stabilizer and 1 antipsychotic to treat my debilitating depression. after my first diagnosis of POTS, they told me that it was not the main problem. next i was diagnosed with SLE (Systemic lupus erythematosus) and Rheumatoid Arthritis. it was around this time i started to do personal study's on philosophy, and landed an addiction to the topic of existential realism. my depression started to lift right before a new set of symptoms cropped up. i would space out with no memory of the lapsed time, next began the seizures, and i was diagnosed with Epilepsy. i began to read up on these illnesses and weather or not they could be related, and what home treatments and herbal medicine could be helpful. a few months passed in which time nothing eventful happened health wise, except for a scare when i dropped some weight. i wrote an article for the epilepsy foundation. and attended a Lupus support group a few times. it was during this time that really began to figure out what it meant to be happy. i can write from anywhere, a hospital bed, my bed, a park bench, and i found that thats what gave my life meaning. being able to share my experiences in life. a few weeks ago i saw my rheumatologist because i was having problems with my small joints subluxing and dislocating, i was diagnosed with EDS type 3 (Ehlers–Danlos syndrome) but this time the diagnosis didn't hit my mental health so hard. my rheumatologist and i talked about physical therapy and splints, and i got a wheel chair for mobility. even though i have multiple serious medical conditions, i honestly think i have never been happier. i am ready for anything.

being sick is a job in of itself

every day i have to do things to keep my body functioning. things that people who do not have to live with an illness, don't have to do. the reason this is so unfair is because people who are not sick, don't have to take all of these extra steps. but i do, and i dont have the energy for it. i have to take pills 4 ties a day, i do 4+ breathing treatments every day, i eat high fat, low carb, i wear braces and splints, i do physical therapy, there are so many things that i have to do that healthy people don't and they are the ones with all of the energy. i get so angry sometimes, like, i feel like i got cheated in life. when i think back there was really never a time that i had it easy. between mental and physical illness, the loss of my mom etc. its always been rough. i don't want to complain because i have a lot to be happy about, but im scared. this is my life and im losing it because im sick.