Hi. I'm Carol, 19/f, and I haven't been diagnosed yet, but undergoing tests, etc, and have many obvious symptoms.
I'm really scared about getting all the results back. Even though I already know that whatever I have is probably going to stick with me the rest of my life, I dread being diagnosed and having lupus written in stone as my lifelong illness. I'm just trying to get my life going, I live by myself, and I'm trying to get ready to start the university, but I feel like if I get the news that I have lupus, everything will just fall apart. I mean, on top of my bad days, which are hard enough to deal with, knowing these bad days will follow me around for the rest of my life terrifies me. And I know the stress caused by worry, money, school, work, AND the symptoms can't be good for my body and is probably aggravating the sickness. I'm trying to show my loved ones that I am strong, that I am keeping my head up and staying positive... but inside I feel like everything I imagined life was going to be just isn't going to be an option for me any more (med school, children, traveling the world) and I constantly think about all of the horrible days ahead. Of course, I know I'm still going to be able to lead a somewhat normal life, and that I shouldn't let my sickness limit me, but I feel like I am going through a phase where my depression causes flareups and my flareups cause depression, with no happiness in between, and it's all a horrible cycle that never ends. I would just really appreciate any advice about dealing with when you were first diagnosed, or if you were ever terrified about what was to come.
Oh and one more thing, in lupus (in your experiences) do symptoms start mild when you are younger and get worse as you age? or do they stay mostly the same your whole life but go into remission sometimes?
Thanks everyone :D And it's nice meeting all of you.
Hi acetrace welcome to a wonderful family that will root for you all the way through this journey. I remember clearly how I felt the day I was told I have lupus. I felt like my whole life came crashing down yet at the same I thought, "Thank God there is a name for this horror and it can be treated." There is a grief process that takes place with any loss and we know the person we once were is lost, and we have to learn to work with the new body. There are grief stages we go through. There are some threads on it.
Yes stress is really bad on us and we need to find ways to modify our lives, but it doesn't mean we have to give up all our dreams. I have a cousin with lupus and she gave birth to two babies. We have several women on this forum in college now.
As to your question if symptoms worsen over time, mine did, until I was put on Plaquinil and low does of prednisone. I do my part by resting, using sunscreen and avoiding UV to the best of my ability. I eat healthy and exercise as I am able, and when I have a flair I sleep.
Thus far I am still able to work and celebrate life fully. Yes I have bad days, but mostly from the fibromyalgia and lately my thyroid and female hormons. The lupus seems to be quiet.
I wish you the best dear. I know many will be here rooting for you. (((hugs)))
Hi Carol, Welcome, lupus affects everyone differently I am a 42 yo male and have had symptoms all my life, I got a rash a couple of years ago that would not go away a derm did a biopsy and told me it was tumid lupus and it would only affect my skin, but I have all the symptoms of SLE it just doesnt show up in my blood, which is not uncommon, but ever since my rash showed up my symptoms have gotten worse, but I don't know if this is true for everyone, but there are alot of great people here who can give you advice and support. Also I can tell you from expierence that lupus loves stress, I know it's hard to deal with at times, but try to stay positive.
I can empathise with your being scared of the future in some ways, especially with the thought of university, and your whole life ahead of you.
My 10 year old daughter was diagnosed with Lupus over 2 weeks ago and we have only just begun on this lupus journey, and my family and I have only begun learning about this disease. At first I was concerned about her future, the changes we would need to make and how the medication might affect her. However, what I can say is it's not as scarey as it was before my daughter was officially diagnosed as we're learning to adapt; we take it more in our stride than we thought we would at first.
We have been told that most with Lupus live normal and fullfilling lifestyles and I think that this is the positive thing to hold onto through it all.
Thinking of you~
Hello and welcome to WHL! Although I hate the fact that you are dealing with this but I am glad that you found us.
I understand how fearful being ill can be but, in my experience, there was a relief that came from getting a diagnosis. I was put on meds that helped with my symptoms and I felt like I could breathe. Breathe because there was an answer to what was wrong. Breathe because I wasn't crazy I was ill. Breathe because now I can stop just getting sicker and sicker and we can try to stop what is going on. As for the question about getting sicker as you get older I personally think it comes more from having a disease that isn't being controlled. The longer my disease went untreated the worse it became. I can't lie to you and say it is all perfect now that I have been diagnosed but what I can tell you is that things stopped getting worse.
I know this is scary but sometimes the fear of the unknown is the worst fear at all. It's going to be OK. You will find a way to cope. Once you get your answers, whatever they are, you will find a way to accept it, treat it and learn a new way to live. I hope you get an answer soon and I also hope that it brings you some peace. You are correct about how stress affects us. I will keep my fingers crossed that you can find a way to reduce the stress and enjoy your life again.
I am glad that you found us and decided to become a part of our WHL family. I look forward to getting to know you
Thanks for taking the time to share a bit of your story with us. Here is a bit of mine-
I'm a 43 year old guy who was diagnosed with SLE in 2004. My mother also has Lupus. She's in her 70's now, and was diagnosed over 22 years ago. Since her diagnosis, she has fulfilled many dreams of travel, and has had a very active, and happy life. She always wanted to see Europe, and a few years ago, she saw Europe! She's still very active, and does all sorts of volunteer work. Lupus does not stop her doing most of the things she loves to do. As for me, I'm learning to race a dragster in formal competition (a longtime dream of mine), and I lead a pretty active life in other areas as well, despite having Lupus, as well as MS.
The fear and uncertainty you are feeling is a normal thing. There's nothing wrong with saying you are scared, it does not mean you are not a strong person. In fact, after reading your introduction, you sound pretty strong to me. When I was where you are now, pre-diagnosis, I asked the same questions you do, and I felt the same fear. After being diagnosed, and getting on an effective course of treatment, the huge monster that was Lupus, shrunk, and lost most of it's teeth. Accepting the news was horrible, and things were not easy at first, but it didn't last. I learned new routines, and found new ways to do things. And the things I could no longer do because of Lupus, I replaced with activities that are in many ways, even more challenging (and fun) than what I did before.
Lupus is serious, it can be a huge challenge, and it will change a person's life. However, it does not mean an automatic end to all that we can love and enjoy in life. Things will get easier for you, it won't always be so scary, and so hopeless feeling.
Have hope, and welcome to our group,
Me and you both are going to battle med school, travel the world, and live long awesome happy lives. =) I am 18, just starting college this fall as a pre-med major. Orienation kicked my butt the past two days but Im really excited for school to start. I too stress myself out A LOT and it just makes me more sick. Im going to therapy for stress management and such right now and I feel like it is helping me. And as far as I know if they catch it early and start you on some medicine that can usually help with things getting worse. Im glad you found us!
I know exactly how your feeling. I'm 22 years young and I was just recently DX on the 19th of July. I was feeling the same way you are and also wonder and wonder. I would lay in bed on my days off and just feel sooo unhappy and sad and wouldn't know why I was feeling like this. Nothing made since. Be strong and we can learn more about it together!
One thing is for sure, life is not over, because of this diagnosis, but it will change your life.
You will make adjustments, whenever nessecary.
I am 55 and I still work, it is very hard, I admit it, but you'll do what you have to do.
We all have bad days, weeks or months, but we also have good days. And once you are on the right meds, things usally get better. If you have a flare that knocks you down, you will get up, brush yourself off and start all over again.
The most important thing is to take your meds.
Hi Carol: I know you are very scared right now and you will go through many ups and downs but finding this site will be very helpful to you. I have only been diagnosed for a few months and I have learned so much from this site. Please let us know how you are doing and we will be there to support you all we can.