Young Adults Living With Lupus

lstallone92

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,
Lauren 

alzee

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 💛

karin0923

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 .. 

christalmariee

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. 

aleena

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.

AdrianaDS

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!

biologybunny

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!

yaya2311

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! 

DoctorLeechy

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!!!!

briannawelborn

Hi all! I'm 19, I was diagnosed at 14, but they had speculated I had it since the age of 5 and it took them a long time to diagnose. I was put on plaquenil and neurotin(gabapentin), but after major eye damage I got taken off of plaquenil and I took myself off neurotin after falling into remission because of major brain fog and loss of memory. Now my pain is bad, but there's not much anyone can do. I'm finishing up college, and it's hitting me that I have to start looking for jobs and I'm not really sure how to manage that yet with lupus. If anyone is in the same situation, feel free to reach out. Not sure how to manage adulthood and life with lupus quite yet. 

jbeals

I started showing symptoms when I was only 8 years old. My hair would fall out in chunks, then grow back & repeat itself over and over and I had no idea why. I was made fun of for my hair loss from elementary to high school. I never realized how much pain I was in and how alone I felt until I grew up.

I finally got diagnosed when I was 20. So many years later, after multiple doctor visits, blood work, it was a scalp biopsy that confirmed it. Unless you experience it personally, dealing with hair loss at such a young age really messes up your self esteem. I even feel bad now talking about this because there are people with this disease that have worse symptoms and are suffering. But this is something I’ve kept in my whole life. I’ve never had anyone to relate to, or talk to, or that understands. 

Hair is such an important factor. I’m 23 today and I’m still struggling. I hate that I have to wear wigs. I wear headbands every. Single. Day. I try really hard sometimes to not wear them but I hate how obvious it is that I’m wearing a wig. I try and style them but I’m not good. I wish I could go bare and bald but I have way too many lesions. I feel like I’m doing myself an injustice because I’m young. I have so much life ahead of me. And I’m allowing this to control me. I don’t know how to deal with this anymore. I don’t feel pretty unless I have a wig on. I can’t stand to look at myself without one. I think about the future and having a boyfriend, would he care? I went to Rick’s Cafe last year and watched my sister cliff jump while I had to sit on the side because my wig would’ve come off if I jumped.

i don’t know anymore. I’m tired. All of the time. And I can’t even work without my feet feeling like they’re about to fall apart. Giving up. 

hicks0407

Hang in there, I’m a male and have felt the same way. I have really not lived life for about 10 years. The struggle is real, and hard to deal with. All we can do is give it to the Lord. I pray your hair start coming back in.

maya_becerra

briannawelborn said:

Hi all! I'm 19, I was diagnosed at 14, but they had speculated I had it since the age of 5 and it took them a long time to diagnose. I was put on plaquenil and neurotin(gabapentin), but after major eye damage I got taken off of plaquenil and I took myself off neurotin after falling into remission because of major brain fog and loss of memory. Now my pain is bad, but there's not much anyone can do. I'm finishing up college, and it's hitting me that I have to start looking for jobs and I'm not really sure how to manage that yet with lupus. If anyone is in the same situation, feel free to reach out. Not sure how to manage adulthood and life with lupus quite yet. 

oh my goodness! hi!! 
I just wanted to say I'm in the same boat... today is my first day on this site and I am thankful for it already. I am 18, diagnosed at 15. I am currently taking plaquenil and other medications. But I have been getting checked for my eyes as well because they are afraid of the damages it can do. And I am also starting to attempt adulthood with this disease... good luck to you

Angelo

DoctorLeechy said:

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!!!!

Angelo

I am tears eye, because I can feel your pain . That’s my life. Hang in there! We in this together. 🙏🏾❤️

kiprisun

Hi! I’m Kipriece. I’m 20 years old and I was diagnosed w lupus when I was 15. Over the years my experience w lupus has been slowly lowering my quality of life. It’s been getting worse as I get older. I’m grateful that I haven’t had any severe damage but everyday I have headaches, joint pain/aches and stiffness, and even photosensitivity has been a growing problem for me. I completely understand the way you feel. I get emotional a lot when I feel isolated or realize I can’t do the things I used to. I’m here for you and I’d love to be friends!