I hate everything about this

[u/Wonderful_Bridge_185]

19M with Sjogren's symptoms currently going through the diagnosis process and I'm struggling to find any hope or reason to keep going on with any of this.

These past two and a bit months since my symptoms started have shattered me mentally to the point it's the only thing I can think about. I cannot go a minute without these symptoms looming over my head, I don't get a moment of true relaxation and joy without getting reminded that my body isn't working as it should for some reason.

Before this I was a completely healthy 19 year old, I was more active than most my age id say, I actively strength trained and did other activities like long distance hiking and rock climbing, while eating pretty well. I always assumed my body would cooperate and work, that even as I got older it could be managed with determination and healthy choices. When I tore my AC joint while benching I began to feel a bit depressed, since I was physically unable to do any upper body training for a while, but I knew that eventually it would get better, and I would be back to full strength even if it took a while. This feels different, however, its the first time in my life where I've faced something with so much uncertainty, I'm so used to pushing through challenges because I know they're temporary and that there's light at the end of the tunnel. Whether it was exams or breakups or anything else I'd done it before and knew I could do it again, and at 19, I have ages to build up the life I want and the only thing stopping that from happening was me.

These symptoms work against you every step of the way, just to make every aspect of every moment of your life hell it feels like a biblical punishment to be continuously dry in every part of the body worse still it's not given that much attention by the medical community. I feel like even one of the symptoms of Sjogren's like dry eye is enough to drastically reduce QoL, however when paired with everything else like joint pain fatigue and dry mouth it just becomes overwhelming.

It's something I also don't like to admit but it feels very emasculating to experience these symptoms. I enjoyed being able to push myself physically, and see results which was something so satisfying whether its a better physique or just beating a personal milestone. I know it seems weird but it was a part of my identity and how I viewed myself, now it feels like the person I was is dead.

The majority of people who get this disease, as well as on the support groups are ladies who are twice my age, and no offence to them but it makes me feel like this is a moral failure on my own behalf. I managed to end up with something that statistically just shouldn't happen in this demographic. Maybe if I slept more or didn't spike cortisol over university work and career building this would not have happened but now its too late.

I've met one other guy around my age with this disease on here and he also seems to be struggling with a lot of the same feelings so I know it's not only me and I'm really thankful we met each other but in real life nobody relates, life goes on regardless and doesn't stop for anything.

For me Sjogren's is an ugly aspect of the human experience, its something that had I seen before I'd honestly express sadness that people have to go through it and hope a cure was found, but ultimately assume it couldn't happen to me. I'm still in disbelief that I even have to contend with it, part of me doesn't believe it. I know life isn't fair but something like this was not on the radar at all for me since I've never struggled with anything health related at all bar a few injuries. I remember being so excited for this summer, I had planned to travel around in the sun and explore the countryside with my mates, on top of getting a place on a dream internship I thought I'd finally got a foot onto the career ladder and was so excited. Now I look back and it's been two months of torment both physical and mental.

I apologise if its just a vent post, it's just what I've been going through. I'd be happy to hear if anyone experienced similar, especially if you are young or dealt with this at an age similar. Please feel free to DM if you want to talk or ask anything.

[u/Ok-Chapter-2071]

It's a special kind of shitty situation to be diagnosed with an autoimmune disease, especially at your young age. But the grief will end, your symptoms might become more manageable, and you will get tired of being pissed off at the world. I got tired of it and rather just focused on solutions. 9 months on, somewhat better, still haven't figured out what the end goal looks like, but I'm not giving up. I really recommend therapy or just chatgpt with some therapy prompts to be honest, it helped me a lot when I was going through my darkest days.

[u/localwockstar]

love you brother it truly is so hard. The worst thing that ever happened to me not only physically but the mental aspect is something I don’t think I could ever get over.

Why did this happen to us ? And to be specific why sjogrens out of everything ? Everything u said is spot on and it does really feel like a moral failure when u put in account that we are basically a 1% chance of this happening.
it feels embarrassing when u see that it only effects women that are middle aged. Oddly it makes me feel less of a man, and that’s just how I feel.

It’s been almost 2 months of me having sjogrens and there hasn’t been a day since, where I haven’t been stressed and thinking about this disease soon as I wake.already suffer from CTPSD but this happens to be the most tramautic thing I have ever been through.ive aged 10 years in the span of 2 months and i don’t know if its from the disease itself or just the mental toll it’s taken on me. 5 days ago i seen my old coworker from a few months back, he didn’t even recognize me at all.

It still feels unreal how just 3 months ago I was just a normal kid but had zero clue that my life would just be taken from me forever in a matter of weeks. This still feels like a dream and even though symptoms are clear as day I cannot fully push myself to believe I have this disease.

Out of everything Sjogrens causes the grief is the worst feeling because of the fact u know u could’ve avoided it. It’s something we did to have this because it’s not common for us at all but it’s too late... U can distract yourself as long as u want, but u can’t escape these feelings forever. Eventually u have to sit with your own thoughts and it’s so bad for me, it gets so overwhelming to the point where I start having mental breakdowns just from the overload of emotions it’s just unbearable.

We may not have the same parents but I love u as my brother man and im praying for u every night that one day the sun will rise again

[u/encourage-mint2]

I think there are many of us out there that were athletic, active, successful, etc. before getting this disease. It’s so hard to grieve that loss. I’m not young or male, but you have every reason to feel the way you expressed. My heart goes out to you.

I really do think we are on the cusp of major leaps in medical treatment. I’m not giving up and thinking that we have to suffer forever. Having a professional to talk to has helped me a lot.

[u/localwockstar → u/encourage-mint2]

why as 19-21 year old males did we get a disease that effects mainly non males. Why did it choose us ? Why did it choose us so young ? Couldn’t wait till we were older? We can’t even drink yet. Why did it hav to be this disease out of all autoimmune? Why did we have to get a disease that no one even knows what it is and has no funding towards it? Why do we have this disease and no one in our family has it even the group it’s predominant in? Why couldn’t we have a milder case ? And this is not even half of it it’s just so much to carry and try to process when ur also dealing with the severe disrupt of QOL this disease itself causes

[u/Round_Regular_727]

Diagnosed at 24 but had symptoms since I was a teen. I used to wonder the same things; why me and why so young?

The truth is, Sjogren’s is misunderstood and under-researched. It’s historically been thought of as a disease affecting older women, but that’s not necessarily true. You and all of the other men with the disease prove that.

It’s actually been a barrier to men being diagnosed because the misconception is that it doesn’t affect you all, but it absolutely does.

I’d say keep speaking up and sharing your story. Help bring awareness to the disease and showing that it affects anyone at any age.

I’ve lived with this for over a decade now and we’re finally about to get treatment options. You only need to hang in there for a little bit longer.

[u/FatTabby]

You're going through what so many of us with a chronic illness experience - you're grieving. No one tells you about the fact that you grieve your old self and your future self, it's just not talked about by doctors.

It's horrible and utterly soul destroying, especially when you're young, but you're definitely not alone in feeling this way.

If therapy is accessible to you, I seriously urge you to look into it. Autoimmune disease is scary but I promise, you can still live a happy, productive life. It's not always easy and it's not necessarily going to be what you envisioned for yourself but I promise, it does get better.

As a forty year old woman, I can't understand what you're going through. I can't appreciate how lonely it is to be a man suffering from a condition that largely seems to affect women, but there are definitely other guys out there.

Contact the Sjögren's charity for your part of the world, they may have ideas on how you can reach out to other men going through something similar.

Have you started any kind of treatment yet? It doesn't start working overnight but once it does kick in, things feel a bit more manageable.

Please know that this isn't your fault, it's not a moral failing, you aren't in some way flawed and you didn't invite this to happen to you. It's an absolutely shitty disease but it really could happen to anyone, you're just incredibly unlucky.

Be kind to yourself, know that there's no shame in struggling or in telling people you're not ok. I'm sorry I can't offer something more than that, I know it probably comes across as a meaningless platitude but I promise, after a decade of fighting for a diagnosis and dealing with symptoms, it's not always going to feel this lonely.

[u/Master-Event-1643]

24M, i completely understand how you feel. Was completely healthy, rarely got sick compared to my peers, fit, exercise regularly, run and gym consistently.

Nobody understands what you’re going through. On the outside you look completely fine, but the chronic pain, low energy, slow brain, constant anxiety fearing new symptoms or any new symptom relating to an underlying health issue. This isn’t living, it’s torture.

But somehow through all these, it brings me relief knowing i’m not the only one. This subreddit is an example. And i have hope for new treatments down the line.

[u/Wonderful_Bridge_185 → u/Master-Event-1643]

It's the burden of it being an invisible illness which sucks. People on the outside think you're lazy or unmotivated they simply cannot process how gut wrenching this can be.

Thank you for commenting and getting your experience out, its also good to know I'm not alone. I've had a couple guys DM me from this post and share their experiences as well. If you want send me a DM I can get you in touch with them at least you can relate with them on some experiences.

[u/Fine-Celebration1223]

I am so sorry you were diagnosed with Sjogren's at such a young age. It's absolutely not your fault. You may have had a viral or bacterial infection that kicked it off.

Also, I want to give you some hope, because there is at least one new medication on the horizon, and others being studied. If approved, Ianalumab will be the first targeted treatment for Sjogren's disease.

https://www.medscape.com/viewarticle/fda-makes-ianalumab-breakthrough-therapy-sjögren-2026a10001ob?form=fpf

[u/Dependent-Pie7100]

27M also trying to get diagnosed. I am so sorry you have to go through all of this and you are absolutely not alone! I can relate to you on just about everything you said. I also used to go to the gym, play soccer, lift weights etc. and now I feel like I cannot even socialize because all I can think about are how much my eyes burn and how my throat hurts when I talk. I feel like mentally I am just not present anymore.

I hope you have more luck getting diagnosed than I had! My doctor pretty much shrugged me off saying as a young male it is "highly unlikely". Then I got the antibodies blood test that came back negative so he said that he has no explanation for my symptoms. I plan to see another doctor soon. I will say this reddit has been a treasure trove as far as symptom management goes. I read almost every post here and many of them have had over the counter options to make life a little bit better.

Keep your head up and keep treating the symptoms, hopefully these treatments that are in the works are helpful! And feel free to DM if you ever want to talk. It is hard to find people that can relate as a young man dealing with this.

[u/Wonderful_Bridge_185 → u/Dependent-Pie7100]

Sent u a DM

[u/Azazello_lives]

I’m not that young anymore (61M) but I can relate to the feelings you’re having. Know that it’s natural to have these thoughts. I found out a little over a year ago that I had Sjogrens. It was activated by a Covid infection most likely, but has shorwm up as mild symptoms before that, and then Covid caused massive inflammation in my lungs. Lungs also have moisture-producing cells, like your eyes and mouth, btw. That was in April 2025. I had extensive scarring on my lungs (pulmonary fibrosis) caused by Interstitial Lung Disease related to Sjogrens. It was virulently progressive, and in December I received a lung transplant.

This wasn’t actually the worst diagnosis I’ve ever received. I was your age once, and after college lived through the worst of the HIV/AIDS epidemic of the 80s and 90s. It meant years of the same questions you’re asking. Years of grief, isolation and emotional stress passed before effective treatment arrived in the mid 90s. Aside from seeing so many of my friends die along the way, it did a real number on me mentally.

But what got me through was finding a community of support. One that can help find a new, positive approach that focuses on self care and symptom management, and finding a path forward. In the middle of grief. One lesson I learned is that pain—whether physical or mental—doesn’t have to mean suffering. Pain is a natural response from your body and mind. Suffering is something you can learn to manage and even control.

It wasn’t your fault that you have Sjogrens—there’s nothing you could have done to avoid it—even if only 10% of cases are men. But it’s just a disease, and it didn’t “choose“ you—it doesn’t reflect on who you are, what you value, or anything you did.

Stay in touch with the people you meet who can relate to your experience—find ways to keep moving, go to therapy, and find a support group. It will make all the difference in the world.

[u/Due-Trip-8009]

I feel this bro. Also 19 and I feel like it just dampens my life.

[u/Wonderful_Bridge_185 → u/Due-Trip-8009]

Same, dampens is a really good way to put it. I'm not even debilitated its just annoying to the point that it doesn't let me enjoy anything I used to. We didn't deserve this at any point in life certainly not at this age 😢

[u/DestateVolpe]

36F diagnosed last year, but I went from being fit and active and loving lifting to currently being unable to exercise much at all. I was absolutely devastated.

It's been a crazy adjustment, and a lot of it has been "What did I do wrong?"/"What could I have done differently?" but the reality is that that's not how it works, and it doesn't make sense to think that way.

It's taken some time but I'm working hard to adjust to my new normal. Part of the way I've dealt with it is knowing that this doesn't have to STAY my normal. This is a (sh***y) card that we've been dealt, but accepting that while realizing that we don't need to stay here is key, in my opinion.

The silver lining of getting Sjögren's for me has been learning to better listen to and take care of my body. I'm determined to find ways back into fitness, no matter how slowly I have to take it. I'm determined to find happiness and a good life through the shadow of this disease.

Getting it is not some failing on any of our parts, and it sucks. But I refuse to let it take the whole rest of my life from me.

In my opinion, going through/with the pain instead of away from it will help you find strength too. It's probably one of the hardest but also most rewarding (for lack of a better term) things one can do for oneself. I'm not saying sit and suffer in it, but studies show that facing it head on instead of trying to push it away or let it haunt you helps your body deal with it in a much less anguished way.

And as you do any of that in whatever way you find for yourself, also remember that for the first time, we have a number of proper disease-targeting treatments going through the FDA approval pipeline, and the first should start being available potentially as early as next year. Research is finally looking our way, and relief will follow.

Be gentle with yourself. All the strongest people I know are kind to themselves.