I am especially mindful of our younger participants on this site that are experiencing illness that I'm certain none of their peers can relate to.
Remember the saying "youth is wasted on the young." My heart goes out to the younger generation that should be thinking about all their hopes and dreams coming to fruition. Instead they are battling pain and procedures.
Instead of meeting and making the friends and relationships that will carry them through life, they are meeting doctors, nurses, technicians.
Not that I'm not grateful for the medical support that we all receive here, heaven help those in 2nd and 3rd world countries that are ill, but our young people are missing so much.
I hope at least "my friends" will join with me in remembering the young ones in particular that participate here.
Thank you for bringing up the issue related to younger participants. I am 26, from India. Yes its not an easy life and its not how i imagined to spend my years when all of my friends sail smoothly through their lives and i am the one struggling to even complete my studies.
But i really cant complain. Even though things are not easy and i miss many things, I am blessed with a great family, always there to support. A good doctor ( after changing at least 7 reuhmatologist i finally found a good doc). very few but really good friends who understands me and my reasons. and this site, where i can connect and relate with those who are just like me.
I just turned 25 a few weeks ago. Within the last year I have gotten married, graduated from college, gotten really sick, was diagnosed with lupus, quit my job, started working for myself, and have traveled more than I have in my entire lifetime. It was by far the best AND worst year of my life. Even though I had been looking forward to getting my degree and getting married, lupus crept in to my life during this time and made even the most magical moments in life a living hell.
My generation / my peers are all starting families and careers, while I am taking a hiatus to focus on my health. Going through the stages of grief has probably been the hardest part of being diagnosed. I am lucky to have a great support system (in my own life and here online) but sometimes it is downright depressing, feeling as though my youth and former life were taken from me by this awful disease. However, it's been almost a year since my diagnosis and I'd like to report that things ARE getting better. I have moved from the depression stage of grief into the acceptance stage. After a year of hell, I feel like I am finally getting my life back! Even though I feel fatigued and the pains of lupus everyday, my mood is more optimistic and I can finally say that I find strength in my suffering.
WE ARE NOT OUR DISEASE. We are a generation of smart, beautiful, creative, hard working, proactive, accepting, passionate, and STRONG people. Just because I have lupus does not mean that I cannot fulfill my dreams of having a career or family, I simply had to change my plans a little bit to accommodate for my current state. I take each day a little slower, and I have learned to be grateful for this.
Thanks again for posting this! It really touched my heart, and actually inspired me to make my first post on here!
NOTE: If anyone who is newly diagnosed is reading this, I highly suggest researching lupus and the stages of grief. Believe it or not, what you're feeling is normal!
I turned 16 less than a month ago, and was diagnosed about two months ago, so I believe that I may be one of ghe youngest participants on the site. And while it’s definitely scary to read about all the things that people are goig through, it’s posts like Sarahs that still make me feel a little bit better about things!
I live in Sweden, and am a minor, so healthcare and education is very dfferent for me than for a lot of people on the site - but right now I’m doing my best to do what I can in the system that I’m in! I’ll be starting Gymansium (I believe that’s the Swedish equivalent of High school?)in two weeks as a science major in one of the most popular and prestigious Swedish Gymansiums for my major, Norra Real, which I fought tooth and nail for to get into (grades = merit in our system, whereas I graduated 9th grade with 335 out of 340 possible points). I’m going to be talking o the school nurse about PE, and do my best to keep up the grades and hopefully become a doctor myself one day - providing that I can manage my lupus as I go. I look around on this site and see all pf these wonderful people struggling but GETTING SOMEWHERE, and I end up feeling determined to contribute!
Of course, this is just the lower levels of education and it’s probably a bit silly to get so worked up about it. But if it gives you something to keep working towards, that’s still good right?
My daughter, now 14 and entering high school this year, has been dealing with so much since she had her first flare at 11 years old. Together, we have handled the invasive procedures, endless tests, back and forth diagnosis and multiple symptomatic issues. The doctors are not who she wants to hang out with and her teachers and peers are very impatient with her absenteeism and lack of participation. It's interesting to me that even with an accommodation in place, teachers and students act as if shes faking things or just lazy, friends act like she gets special treatment. It took 3 years just to get help at school for her and even then it was a nightmare. I don't know how to answer her pleas to make it go away, sometimes it frustrates me to no end. I don't post often because its me, as mom, here and not her which I feel odd commenting on. I cant express the things she must be feeling for her. Thank you for noticing that the younger kids could use the support too, I think the arena is slightly different than an adult, not wholly different but with a few added nuances.
I grew up with Lupus, so I can really relate to the youth who have it. I was undiagnosed until age 21, but I still had all the hospital stays and Dr. visits of various organs getting inflamed or damaged.
This post truly touched my heart. I am 22 years old, working full time at a law firm, a class away from getting my Bachelors degree in Criminal justice, and was diagnosed with Lupus 6 months ago. It all started with swollen ankles and legs, which led to blood tests, ultrasounds, and a kidney biopsy that led to my diagnosis to Lupus Nephritis and Stage 2, chronic kidney disease.
At first, I was speechless because I was unaware of what Lupus was so I did my research online and through books. This forum has definitely helped me accept this disease and to have a positive outlook for my future.
I often think about how young I am and how much I am limited to because of this disease but I have faith in god and everyone on this forum that is going through what I’m going through.
Good thoughts. The fact that young, innocent people with the potential for a fabulous life have to endure the crippling effects of lupus is terribly sad. Worse still is that those in the third world countries you speak of cannot receive proper treatment for their ailments. I wonder if there are fund-raising events for such people.
Of course it is good to have something to work toward, Victoria. Do not give up on your dreams. They are still within reach as long as you are alive and functional. Don't let anyone tell you differently. Things will get better for you. Wait and see!
Thomas Franklin
Victoria said:
I turned 16 less than a month ago, and was diagnosed about two months ago, so I believe that I may be one of ghe youngest participants on the site. And while it's definitely scary to read about all the things that people are goig through, it's posts like Sarahs that still make me feel a little bit better about things!
I live in Sweden, and am a minor, so healthcare and education is very dfferent for me than for a lot of people on the site - but right now I'm doing my best to do what I can in the system that I'm in! I'll be starting Gymansium (I believe that's the Swedish equivalent of High school?)in two weeks as a science major in one of the most popular and prestigious Swedish Gymansiums for my major, Norra Real, which I fought tooth and nail for to get into (grades = merit in our system, whereas I graduated 9th grade with 335 out of 340 possible points). I'm going to be talking o the school nurse about PE, and do my best to keep up the grades and hopefully become a doctor myself one day - providing that I can manage my lupus as I go. I look around on this site and see all pf these wonderful people struggling but GETTING SOMEWHERE, and I end up feeling determined to contribute!
Of course, this is just the lower levels of education and it's probably a bit silly to get so worked up about it. But if it gives you something to keep working towards, that's still good right?
I just want to say what a lovely, touching post this is. I’m 20 and struggle like all of us lupies do but so often get looked at and told I’m lazy and should ‘embrace my youth’, so it’s nice to be recognised and treated as equals! This group is full of so many wonderful people, I truly would be lost without it!
Thanks for this post! I was diagnosed at 19, and have really struggled balancing my sickness and social life. you never see it coming. I was going to school, working, and living life to the fullest and in an instant of time my life was changed forever. I want to be normal so bad and do all the things my friends do. Instead I am spending my after noons in bed or at the clinic. It is really hard to see my friends laughing and going about life. But I just have to do the best that I can where I am at. I am still pursuing my life time dream of becoming a teacher and working with disabled children. I cant wait to use my experience to help others! :) I am learning that some think I cant do this. But I am not going to let people stop me! you have to still do what you feel is right even if its going to take longer then a "normal" person.
Absolutely love this discussion!! I'm now 23 years old but I was diagnosed when I was in 8th grade, a few months after I turned 13 and felt alone and more different than ever with everything I had been going through. I hope the younger people who are diagnosed with Lupus utilize this site and realize that they have others they can relate to and talk to about anything
Thank you for posting. When I read posts from the young ones it makes me feel so bad for them. I don't know if I would have been able to carry on and go through life the way they do. I must say that I am very inspired by them.
I wish the very best for them and that a cure will come soon.
God Bless them I don't think I could have their grace under fire . I have a hard enough time holding it together and I am a well seasoned (51) individual!
I was diagnosed under the age of 10 so I actually think I have it easier because I have nothing to compare it to. I feel bad for those of you that hsd normal lives then got sick. You all have memories of being healthy and full of energy which I have never had. I can’t miss something I’ve never had. I’m 44 now so have been battling it for close to 40 years. I still went to college, worked, had kids etc… It took me longer than someone without lupus but I learned to never compare myself to anyone else. My “good” days would have many people in bed whining judging by how they react to the flu…lol The best advice I have for our younger members is don’t compare yourself to anyone but yourself. Also figure out your pain scale and share it with your doctor. For example a 10 on my scale is where I’m nauseated, on the verge of throwing up and losing control of my bladder and bowels, light headed, vision is fading in and out, shaking, cold, and sweating. My doctor told me that my 10 was pretty extreme but he was glad I shared since it made it easier for him to medicate me appropriately. Just my advice.