I Have An AutoImmune Disease

I Have An AutoImmune Disease


– I have lupus. – I have type one diabetes. – I have Hashimoto’s. – I have ankylosing spondylitis
and Crohn’s disease. One day, it was December 19th
like I’ll never forget it and I just woke up and my
right foot was really swollen. – Honestly throughout
my life I’ve had like health issues, I’ve had
periods where my body has just shut down and I couldn’t move, I got rashes throughout
my entire adolescence, and I just thought that was just me. – And I just thought
it was stress related. I remember just going through
one of the most stressful semesters I’ve had in college. – I was feeling really manic. Like I thought I was
going through an episode cause for a few months I
would feel like really good, and have a lot of energy,
and just racing thoughts, and it was like just kinda jittery, and I was losing weight, and I felt like oh that’s great. And then I would be eating the same food and a few months later I
would be really like tired, and I would feel really emotional, and really depressed, and
I’d be gaining weight, and I didn’t really change
anything in my lifestyle. – My mom took me to urgent care and they did an X-ray and they said I had a hairline fracture. To this day like I don’t think I did but I don’t really know. So they gave me this
little butt-booty thing to walk around in and
you’re supposed to wear it for like a few weeks, and after those few weeks
nothing had changed, and it had actually kind of gotten worse. My foot was more swollen
and now my big toe is also really swollen and hurt, and that was kind of
just like the beginning of a six month process of
going to dozens of doctors, and getting like so many
different diagnoses. – Well by the time I was in college, I was getting sick a ton and after I’d graduated, I went through a period where I just could not move my body. It literally felt like I had been run over by a train multiple times. People would be like
well what’s feeling bad and I’m like ah everything. – The only signs or
symptoms that I was getting where I was just thirsty a lot, like all the time, like I
just needed a lot of fluids and so by extension I was
just like peeing a lot. – And I went to the
doctor and they thought oh well you’re like depressed, we’re maybe gonna give you some pills cause I just, I was crying
in the doctors office, I was crying everywhere I went. I did my physical and my results came back and my thyroid was all off. – You know a doctor told
my mum that I had leukemia while I was in the room and just like so many other random diagnoses, until finally my mum took
me to a rheumatologist who diagnosed me at the time with juvenile rheumatoid arthritis. – Well it wasn’t until my mum told me that lupus actually runs in my family and I should get tested for it cause I had been to doctors, they never seem to test
autoimmune diseases first. So I had to literally beg them please just like run some tests for it. – For a few years I thought
okay I’m just living with this arthritis thing, and then my freshman year of high school, I started having lots of stomach issues. I had a colonoscopy and I
was diagnosed with colitis. – It was only until
like I went on vacation after the semester ended
with my family and stuff, and my mom actually started
noticing those signs of just being thirsty all of the time, so she was just like you should check to see if you have type one diabetes. I went to my like school doctor after that and they did some tests,
sugar levels and stuff, urine and everything, they were saying yeah this is like signs of type one diabetes. – Having the colitis, the
juvenile rheumatoid arthritis, and the iritis, my doctor
was like oh actually, because of all of these different things, we’re gonna test you for something called the HLA-B27 gene, and they
tested me for that and I had it, and that’s when they sort
of changed my diagnosis to ankylosing spondylitis. – I did my physical and
my results came back and my thyroid was all off. So they started giving me more thyroid. When you find out that
you like having something wrong with you when you
feel like something’s wrong, it just makes you feel so much better because it just confirms like nothing’s actually wrong with you, it’s just like your body is messing up. – I’m not a super-emotional person but when I got my diagnosis, I cried. Half out of relief that I knew like something was wrong with me, and half out of I don’t know
what the fuck is going on. People don’t really talk
about autoimmune diseases so like I didn’t really
know much about it. – Imagine if we were
living in a world already of like driverless cars and that’s like been your whole life, and
you’re just used to that, and then all of a sudden you wake up and then now you have a stick-shift, and you have to like do this manually. It’s like oh my god, I had
no idea that there were all these components to this, like all these components to life, and just basic survival. – I might have a really
good couple of weeks and be feeling great, and then just the next
three weeks just be sick, just like every single
day and feel terrible. And also emotional things
have been hard for me to come to terms with because one of the symptoms is depression, and I battled with depression all my life, and it’s hard when you
physically feel sick and you emotionally,
and mentally feel sick, and just having a support
system behind you, guiding you through that because trust me when you feel like you
can’t get out of bed and walk over to the bathroom
cause you’re in pain, like that will fuck
things up in your head, and just making sure you’re feeling loved and supported is like
the most important thing. – You need to have self-care. I think the doctor talked to me about it was probably brought on
by that stressful episode of my life that I had
because a lot of stress can do a lot of damage to your body. So I think kind of
getting diagnosed with it it made me think like
self-care is really important, and it’s just made me really
in tuned with my body, that everything works together like this little gland here like affects my hair, and like sleep, and fatigue, and like body pains, and things like that. – It takes some time to adjust but you sort of start to just learn and adapt, and figure
out those extra steps that you need to take. – First and foremost like I’m Macy and I love to travel, and I love X, Y, Z, and like I’m not this disease. Like that’s like so far down in like the list of attributes that I have. I think that like if you
can find the right medicine that works for you, you can live a life just like anyone else. Like there’s literally
nothing in the whole world that I can’t do because of this disease. – If you get Hashimoto’s, don’t panic. It’s actually good that
you know that you have it. You can kinda take the control back and improve your life. – This is not a death sentence. It sucks because you might not know a lot about what’s going on. I filled some time with research, I just tried to learn, and
also listen to yourself, like I still go out, I still have fun, but you like need to know your limits of what your body is capable of. And talk to people. You do not have to go about this alone cause you are not alone. There are plenty of chat
rooms, and Facebook groups, and all sorts of things where
you can meet other people who are suffering from the same thing.

100 thoughts on “I Have An AutoImmune Disease”

  1. his analogy of t1 diabetes is so true although i never had the experience of having a driverless car (body without diabetes) as i was diagnosed so young. but compared to others this is just what its like. so much responsibility and worry over something no one else has to think about

  2. I have graves disease and I'm a bit disappointed that it's always about hashimoto if it comes to autoimmune diseases with the thyroid involved. Anyway, thanks for the video, I can really relate to that. Stay strong everybody!

  3. Macy thank you!! I am so glad you said "If you find the right medicine. You can live your life just like everyone else!" I have had an organ transplant. It's been really hard to go through but yet I still continue to live my life! Just because you have a disease it doesn't mean you have to become a lonely vegetable that is disabled. You learn to adjust and keep living! I can't stand people that call themselves spoonies and don't do anything with their lives but complain after being diagnosed.

  4. i have hashimotos and it's nice to hear the story of another person that went through the same things i did (:

  5. Thank you for continually putting these sorts of things in the public domane. So many people don't belive in diseases like these or Fibro like I have and just say it's not real or "all in my head". This gives me a bit of hope

  6. I was diagnosed with Hashimoto’s Thyroiditis when I was 12 years old and this video helped me feel like I am not alone.

  7. my god, I am crying. I was diagnosed with Hashimoto about half a year ago and now I am really struggling with accepting myself. Thank you, BuzzFeed for such a motivating video.

  8. I’m so glad that they made a video about autoimmune disorders. Coming someone who has Crohns and Hashimoto’s disease I feel like it’s not talked about enough.

  9. I have Cold Urticaria. I am “allergic” to the cold by direct and indirect contact. Being in cold weather causes my skin to form bumps and hives. (itchy and painful) It gives me extreme muscle and joint pain. I will lay in bed with pain and irritation I’ve taken medicine and it does nothing. Touching cold food/bowls of food causes my fingers to swell up and become itchy and very painful. Drinking cold drinks causes my lips to swell and become irritated. Being outside causes my ears to become red and burning. Swimming in cold water causes my entire body to form itchy hives. Even being in cold cars or rooms can trigger hives. Most all hives cause pain and itching. Sometimes it is so bad i need pressure applied on my body to stop me from scratching and itching. Normal winter days require my to wear tights, jeans, socks, closed toed shoes, tank top/ shirt sleeve shirt and a sweater, gloves, scarf, a hat, and a jacket. On very cold days, i require tights, leggings, jeans, socks, long sleeve shirt, sweater, jean jacket, puffy coat, scarf, gloves, earmuffs, and a hat. But even so my face will still redden, puff up, and have hives. Most people do not know about this disease and/or do not believe it is real. I fear each time o eat ice cream or drink ice water my throat will close up.

  10. I was diagnosed with autoimmune disease 12 years ago. I couldn't stand it anymore, I watched a video on how going vegan cured them so I tried it. it's helped so much, I really thought they were just saying that to get people to go vegan, but every week I felt better and better, it is possible I could be in a long remission but I don't think so I really feel great. Bread is also a giant trigger for me, so I only eat it once every two weeks. I wish my doctor would have told me how much this would help.

  11. I have lupus and have felt so alone countless of times. Seeing this, even though I know none of you, is so important. Keep fighting spoonies <3

  12. i have no idea if i have an auto-immune disease or not, my doctor said i have symptoms indicative of Hashimoto's disease.

  13. October 2, 2016 I was diagnosed with IgA Nephropathy or simply kidney failure. It’s a autoimmune disease that attacks my kidneys. People don’t take me seriously when I say I have an autoimmune disease, they usually shrug it off. I get tired really easy and have tons of mood swings. Not to mention on top of getting extremely drained from dialysis three times a week. People never understand just because you don’t see it doesn’t mean it isn’t there.

  14. My god. Autoimmune disease has literally ruined/messed up/changed my life, and I’m not even the one who has it. Thing is, my sister has it (lupus), and even though it’s not for sure confirmed to be genetic, my family is thinking it is. And then, of course, there’s the chance of me having lupus, which seems pretty high to me right now.

  15. I’m 24 now but I got diagnosed with hashimotos (hypothyroidism) when I was 7 so I know how they feel and since I’ve had all this pressure on me, I got severe anxiety by the age of 8. I feel so bad for people that have it worst then me!

  16. Autoimmune diseases are real, and painful. People need to be aware that we are going through so much all the time. I have diabetes type one and I have TWO medical devices attached to me at all times! They beep and vibrate all the time! I'm always thinking of a million things to do with my diabetes. If you're talking to me, I'm thinking of you, the conversation, my blood sugar, if I'm shaking, when did I last eat, if I'm stressed, if I walked a lot recently, when I last took insulin, if I remembered to take insulin, should I check my blood sugar now?, diabetes freaking sucks, is there food nearby just in case, I should message my parents, did I count the carbohydrates in the food I ate right?, do I have a high blood sugar right now?, do I have water?
    That's not even everything I'm thinking. And there is no cure. I've had diabetes since I was 10 and I've had to learn to keep myself alive. Everything is 100x times harder for me than an able bodied person. I'm a registered disabled person in my country. It's not a simple fix with an injection, it's a constant 24/7 handling of my health. And I do it. Every year, every month, every week, every day. For the rest of my life! Because what can I do? I want to do amazing things, it may be much more difficult for me but I will, all with a smile on my face.

  17. I have celiac disease and I wasn't diagnosed till I was 11. I'm glad that all of you finally got a diagnosis, I know that once I did my life finally started to feel like it was worth something because up until then I just thought I was broken and no one could help me. I still face issues and my life has and will never be the same, but even through the rough times when my body is literally attacking itself i know that I have a support system that will be there for me.

  18. I developed Grave's Disease and Addison's Disease after the birth of my daughter. However, all the doctors I went to assumed I was just tired from being a 'new mom' or 'just part of post pregnancy' or 'you have the flu'. It got to the point where my heart rate was over 200 bpm and my blood pressure was down to 70/30. I couldn't stand up, I couldn't keep any food or drink down, I couldn't even pick up my baby for fear of dropping her. It took 6 months, the loss of my job and a trip to the ER to discover what it was. I was so scared but so relieved to find out what it was because by then, I was convinced I was dying. It has been almost 10 years since that diagnosis, and while I have my ups and downs, I'm grateful to have my husband and my two beautiful children.

  19. If only there was an FDA-approved medicine for ME/CFS so we could go on with our lives and travel and go out and do things. omf.ngo or solvecfs.org for more info.

  20. I have 2 auto immune diseases, severe anxiety and panic disorder, ADHD and auditory dyslexia and i am constantly told that it is all in my head… The amount of hurt that hits someone when they are told it is all in their head makes it even harder. They need support and love and not too be questioned and doubted.

  21. I love this so much! I have an autoimmune disease that was mentioned in this video and it was great to see people talking about it

  22. I don’t know how I’m barely seeing this video I’m 15 years old and have lupus I was diagnosed at 9 and I’m glad it starting to get talked about more

  23. I have MCTD. Lupus for sure I know as well. My rheumatologist is still unsure of what else. I’ve been in such a dark place. So much muscle pain. That’s my biggest issue. And depression. I thought I was so alone in this. Just talking to others that face what I face, helps so much. So thank you. ❣️❣️

  24. I'm 14 and I have an auto immune disease which attacks the optic nerve in my eyes I also have rhumatoid authritus my auto immune disease is called euveitus ( might be spelled wrong sorry)

  25. My nan has diabetes, my mum has lupus and I have Hashimotos. My family is just full of autoimmune problems

  26. Have you looked at the tie-in between autoimmune and leaky gut syndrome? It goes something like this: a person over time has specific food sensitivities and allergies. Over time, that irritation causes inflammation, and that inflammation reduces their ability to absorb the nutrients they need to. This combines with a genetic predisposition & stress, so you need to have a "perfect storm" of symptoms over time.

    Treating it tends to involve paying attention to what your body doesn't like, and removing those triggers so that the gut inflammation can heal. Then, figuring out what nutrients you're low on, as well as taking your medications like thyroid hormone. It works as a package, and involves conversations with doctors involved in your care.

    Anyhow, my explanation is super simplified. For some out there, it may be worth researching. Others, maybe not. Every person, every individual body is different. None of this should be taken as medical advice. Do your own research. 😀

  27. I just got diagnosed with POTS… I'm thinking about going vegan, because i have to cut gluten, carbs, dairy. I have to up sodium, i have drink a bunch of water and tea and gatorade (which is vegan). I have to sleep at a 30 degree angle every night. I have to exercise every day. It's exhausting.

  28. People in the video and commenting,,,, You all are Real Fighters.
    I'm not strucked by autoimmune disease, I just came here to look for any motivational speech that I could forward to my friend,,, plz. If any one can help me out what diet, lifestyle can be adopted.. Thanks

  29. No offense but like everyone at buzzfeed has some sort of illness. Its sucks that you guys suffered but like is no one normal. I hope you guys continue with this positive behavior. Thats a great mindset.

  30. I was diagnosed with mixed connective tissue disease several years ago. My doctor calls it psoriatic arthritis often. I've had psoriasis since I was in middle school. When I was just about to begin nursing, I developed incredibly painful iritis in my right eye… and then my left. It was my eye doctor who told me I should be checked out for a systemic autoimmune condition.
    Some days my hands swell and I can't grip things. I get terrible headaches. My psoriasis can still be a huge problem. As a general rule I'm exhausted. But then there are days when I'm… okay. I take methotrexate and remicade. My doc and I just talked about increasing my remicade frequency but didn't, because my joint ultrasounds showed no inflammation….because they were done when I was feeling pretty ok. But it's ok. I'm very fortunate to have s rheumatologist that listens to me.
    I'm so glad to see a video like this. Autoimmune conditions are invisible but can be so life altering. Its really nice to see them talked about

  31. I have RA, Fibromyalgia, Sjogrens, Cushings Disease, Hashimoto’s and Hypothyroidism. Self care is critical to living the life that you want and deserve. So many people stay silent when it comes to Autoimmune diseases and we shouldn’t. Research was a form of therapy for me, finding out which supplements and forms of exercise were supposed to be beneficial as well as making tough choices when it came to medications.

  32. I was born with spina bifida and hydrocephalus, I have neuropathy in my legs and lower back. I also have osteoarthritis, type 2 diabetes, depression, anxiety and gastropharesis. I'm 44 years old and had over 50 surgeries not to mention all the procedures and hospitalizations I've been through. I'm a very strong person though and refuse to give up so I live my life as much as I can.

  33. 2:42 lmao just "this arthritis thing"
    cmon. if you have an autoimmune disorder you should know that ra can be debilitating

  34. Autoimmune diagnosis are never tested because it's the whole body being attacked. It's hard. Diabetes is easy to diagnose. Always thirsty and always hungry.

  35. I’ve been sick for 4 months now and been in and out of doctors and hospitals and was finally just diagnosed with an autoimmune disease myself. It’s such a relief to know that I have an answer now but unfortunately what I have is a very uncommon disorder so I still have a long way to go. This video definitely helped me feel like I’m not alone and that there are people out there dealing with the same things I am dealing with.

  36. For anybody suffering with an autoimmune disease the Autoimmune Revolution is online and free from November 5-11, 2018. It's hosted by Dr. Peter Osborne, who is a functional medicine doctor based in Texas. Each day there are interviews with people like Evan Brand, Pedram Shojai and Mark Hyman amongst others, all to do with autoimmunity. I'm watching it to find out more about reducing/preventing inflammation. You can find out more using the link below and then sign up if you think it might be useful for you. Wishing you improved health 💜
    http://urltag.net/C2438

  37. wow..this hit home so much,at age 7 my mom was told I have juvenile arthritis, 50 years later I've finally after years of its in your head,found out its A.S arthritis. it's hit my heart,eyes and kidneys now and pain is a everyday thing

  38. Honestly I was so lucky how I was diagnosed with type 1, I never got really sick but I know a lot of people where it was a little bit to late. All of you with type 1 diabetes I wish you good luck 🙂

  39. I have been suffering for years. So many doctors and no answers, I am on a search to figure it out. This is motivating me to advocate for myself.

  40. i am 18 and was diagnosed with crohns disease a few months ago first medication gave me a awful reaction that put me in hospital …. they now want me to start stage 3 medications. the thought of life long meds at 18 is so scary ….

  41. It sucks how under diagnosed Hashimoto's is. As someone who has it, I know that several symptoms are similar to depression, so it isn't often looked into. I was very lucky to have a doctor that didn't just tell me it was probably depression and looked into it. If that had happened, I wouldn't have gotten treatment probably until later in life.

  42. I have an extremely rare disease called Behcets and my life is hell, i also have disautonomy and scoliosis/kyphosis.
    1:47 and i relate to that a lot! Also people tell me that im exaggerating and that if i think that i feel ok i will feel ok and that everything is in my head when its clearly not….

  43. The worst thing for me was realizing that after all these months, I actually wanted the doctor to tell me I’m sick. Hearing that they didn’t find anything was more terrifying than them actually telling me a diagnosis. When I thought about this I was feeling bad about myself, like, omg you’re such a terrible person for thinking like that but I just wanted a chance to be treated. I just wanted my doc to give my some pills and get my life back. I didn’t really care if it seemed a bit crazy, after two years of IBD symptoms I just couldn’t take anymore of it.

  44. We have seen a major growth in Autoimmune Diseases , Vaccines are the cause for this huge spike !!!
    We will see a even bigger spike as a whole generation grows older and the more Vaccines that are forced on us !
    There is a huge coverup going on with the CDC and the Truth will come out but it will be to late for many !!!

  45. Scleroderma 😒😒😒 I can push thru the daily pain but its the depression and anxiety I struggle with the most.

  46. I had been having horrible stomach pains and eventually was diagnosed with a celiac's disease 4 years ago…I struggled with not eating my favourite foods and hated my disease,it was making me angry and miserable because I never wanted to be someone who would stand out from the crowd…but now,when I've also dealt with depression and am taking my medication and listen to God's word I've learnt to accept myself,accept my disease and I really am proud to say that I love myself now.

  47. I just tested positive for an autoimmune disease )-: I am going to go for more tests tomorrow to find out more. Wish me luck!😢

  48. Thanks for the sharing. I have fibromyalgia and ankylosing spondilitis. I hope we could live better in the future 💜💕

  49. My sister has diabetiess type 1 and now she has auto immune she is suffering in so much pain liver is also damaged can anyone help me out for this with any cure

  50. I've been recently diagnosed with an autoimmune disease and I felt so alone.
    It's good to see more people who understand
    Thank you

  51. The autoimmune disorder affects the different organs and tissues in the body. There are many
    types of autoimmune disorder. "Planet Ayurveda" provides the best combination of effective herbal remedies such as Autoimmune Care Pack for ayurvedic treatment of the autoimmune disorder.

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