Young Adults Living With Lupus

lstallone92lstallone92 Member New Member
edited August 8 in Support
Hi All - I've been living with Lupus since I was diagnosed at 18 years old. I am currently 25 and am fortunate enough to be living with mild symptoms over the years of a total lifestyle adjustment. Diet changes, sleep pattern changes, an overall more holistic approach to life. These changes alone have left me feeling isolated from my peers and the 20s community - adding on the pain and discomfort from the disease leaves me feeling like a total outcast. 

I've been searching and hoping to find peers within my age group to befriend and talk to living with the same (or similar) disease. Major fatigue, hair loss, joint paint are an upside symptom to organ failure, but still incredibly limiting and difficult to communicate with my friends/peers. I'd love to talk to someone going through this similar journey. Any other young adults battling with Lupus out there? 

Warm Regards,


  • alzeealzee Member New Member
    Hi Lauren! I completely understand what you’re going through!

    I’m 27 and living in the city and it’s hard to be in your 20’s and go through this kind of life change. I too have struggled with major changes in my life style. One of the things I find irritating is not being able to drink (I take methotrexate) and drinking is part of a primary social activity in your 20s... 

    i also try a holistic approach but I have pretty moderate/severe rheumatoid/inflammation so I am forced to take medication. Besides that, I eat a healthy, gluten free diet and removing gluten has improved my symptoms tremendously. 

    My journey to diagnosis made me lose faith in parts of the medical society, it was a long road. Shortly after diagnosis I had a flare so severe that I couldn’t walk or leave my fourth floor walk up for 2 weeks. I felt so isolated and alone. I haven’t had many flares in the last year but when I do, I usually can’t walk or move my left arm. 

    Hope other twenty somethings can relate 💛
  • karin0923karin0923 Member New Member
    Completely understand I’m 24 and recently got diagnose two months ago... they have me on plaquenil and I’ve been dealing with chest pains joints pain lots of hair loss !! Good to ding people that understands .. 
  • christalmarieechristalmariee Member New Member
    I will say I habe almost the same struggle. I was diagnosed in my sixteens. A lot had to change for me at a early age and it wasn’t easy. Today I have 23 soon to be 24 in December and I still live with the struggle and the changes. It’s not been easy to find good friends who understands and supports my situation but I don’t let it stop me from what I have to do to be healthy. 
  • aleenaaleena Member New Member
    I was also diagnosed at 18 years old, the week before I moved into college - a college 8 hours away from home and anyone I know. I honestly had no idea how difficult this diagnosis would be for me, I had never even heard of lupus before I was told I have it! I am 20 now and still in college but finding it more and more difficult to keep up with my peers. My symptoms also include major fatigue; joint swelling, pain, and weakness; facial swelling; occasional skin rashes; Raynaud's phenomena; and lots of "brain fog." I have been on Plaquenil since I was diagnosed and honestly feel like the only symptom it helps with is the fatigue. Anyway, looking back now I realize that my symptoms probably started when I was 15. Hair loss was the first thing I noticed but had no idea what it meant, then came the fatigue and Raynaud's phenomena. I hated going to the doctor but my mother kept dragging me from one to the other because she knew something wasn't right. It took three years before anybody had an answer for me! I know you guys understand how frustrating that is, so I'm glad to have this forum. Lupus sucks, but it's nice to know we're not alone in it.
  • AdrianaDSAdrianaDS Member New Member
    Hi! I'm 24 and was diagnosed at 17 so I totally understand what all of you are saying. For me the toughest part was before and right after I was diagnosed because I couldn't do anything so I grew apart form my high school friends and I regret it so much! But I have learned to every now and then do crazy stuff that, sure I regret the next morning when I fell bad, but it makes me fell less of an outcast. However, sometimes my body does not cooperate and is difficult to find people that understand it, I think it's great finding people who go through the same, or similar, stuff. To be honest I don't know any other person my age with lupus!
  • biologybunnybiologybunny Member New Member
    Hey girl I am also 25 and lupus has completely changed my life as well! I totally understand where you are coming from with it being isolating. My lupus has become a lot worse over the past year and a half and has forced me (not by choice!) to modify my lifestyle further than what was already implemented. I too share the same symptoms however also severe neurological symptoms which as you know in our 20's makes a huge impact on our life! I found that joining some lupus groups and signing up to volunteer with these organizations really connects you. Totally understand where you're coming from you are not alone!
  • yaya2311yaya2311 Member New Member
    Hello All! I am 25 years old and I was diagnosed with lupus on May 26, 2016. I was always sick as a child and my first symptoms at age 11 were chronic rashes all over my entire body. It felt like something was biting me, skin felt like it was on fire, and it would last for months. I was also always sensitive to the sun and always tired. These rashes would come and go and I would just go to the ER and get steroid shots to get relief because nothing helped. Finally at age 21 I went to see an allergist/immunologist to see if these rashes were caused by allergies.  Results came back and he said I had a positive ANA and it was 1:640 and that I should see a rheumatologist. It took forever to get in to the specialty clinic, and then finally two years later the rheumatologist said "I'm sorry, you have lupus and you have to live a boring life." I still struggle on some days with the diagnosis and I cry about it. People assume I am ok, like friends, family, coworkers. But I don't feel good 70% of the time! Joint pain, fatigue, rashes, headaches, brain fog, and digestive issues are better than having major organ involvement, but it isn't easy. Do you ever get over it and just accept it? I get really sad about it some days. On the bright side,  I live a fun life and have a good support system! I love going to music festivals and travelling. Lupus has slowed me down, but it hasn't stopped me! 
  • DoctorLeechyDoctorLeechy Member New Member
    I feel this, feeling like an outcast, weird for not being able to keep up with friends, not being able to just get up and go. I just turned 27, been diagnosed for 2 years, but have had symotoms since I was 16. It's really hard some days.......ugh even typing this I'm getting a little misty eyes. It's crummy at times, because some days I am absolutely fine, thinking like 'Yeah I can take on the world' and then the next day I feel like everything is against me health wise. The thing I hate the most is all the pills. I NEVER took pills, and then it was like BOOM pill all day everyday, morning, noon, and night. I have been on CellCept a year, prednisone for 2 years, and something for kidney stones now. Methotexate made me ssssoooo sick and I was actually on a leave of absence from my job due to it. It's hard to put down everything I want to say, because I know you all will understand the frustration of everything Lupus brings with it. From the joint swelling, to being in so much pain you can't get out of bed some days, to the countless doctors visits. Not just that but trying to find a doctor you even like, and who listens to you!!! I hated trying all the different medications to see which one 'worked' for me. And the one I'm currently on (Cellcept) doesn't really do that much. It's really frustrating, because my blood work always seems to come back high, and I do absolutely everything the doctors say. It's tough feeling like your body is turning on you, and like fighting you everyday. It really is, what also stinks is being in your 20's and feeling like you are in your 90s haha. I'm sorry if my message seems so down and sad, this is honestly the first time I've said this to anyone who would understand. Pills stink. Lupus sucks. Joint pain is the worst. But honestly, we all get through it because we can take it. Each day is a victory when I can tie my shoes, button my shirt for work, and just get out of bed. Not a lot of people would be able to put up with what we do, and at such young ages to boot! I think we are all doing pretty good, all things considered.  I've felt very alone due to my illness, and some days are harder than others for sure, but there are many like us who are here to talk and understand :) hang in there!!!!
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