View Full Version : I think I have lupus and I don't know how to go on...

05-23-2007, 03:02 AM
Dear Friends,

Thank you so much for your responses to my posting ("Help with lupus diagnosis"). I have been told by doctors that I don't have lupus but reading through these forums, I'm pretty convinced that I do...

In a word, I am terrified. My life just started to take off and now, I don't know how to go on. I don't even know how to tell my fiance. Everyone I talk to that knows someone with lupus tells me all these horror stories. As soon as I tell someone, "I think I might have lupus," their face falls and they recount stories of endless hospitalizations, hair loss and general sicknesses. Even my fiance recounted to me that in college, one of his friends had lupus and he ended up hanging himself.

I used to be a model and an actress but I don't know what to do with myself anymore. I don't know if I should get married, if I should move to Washington D.C. for this new job, if I can continue acting.

It's obvious to me that if one suspects that they have lupus, they most likely do have lupus. Doctors will delay making a diagnosis or will misdiagnose.

Again, can people please recount some of their diagnosis stories? How did their lupus diagnosis occur? Did it take years? What sort of symptoms started it all?

Much thanks,

05-23-2007, 04:52 AM

Have your symptoms been interfering with your life to the point of not being able to go on or have you been able to manage them and continue living your life the way you want? I know it sounds scary to think you might have lupus and yes some doctors are wrong in their diagnoses sometimes.

Did your doctors check you for anything else besides lupus? There are other illnesses that can mimic lupus like rheumatoid arthritis and fibromyalgia. You will have to keep telling your doctor or some other doctor your concerns until one of them listens to you!

Lupus is different for everyone...telling you my story and symptoms will not be like yours or anyone else's on here. That would not be much help to you in terms of deciding if you think you have it or not.

If you do have lupus....it is manageable and most people live a very long time. I think the worst thing you could do would be to put your life on hold because of it. You can continue to do anything you want, it is up to you. Hope you get the help you need....I will keep you in my prayers. It sound to me like you have a wonderful future ahead of you, do not let lupus or anything else delay the things you want to do....

05-23-2007, 08:51 AM
Try not to let it get to you. I think this forum is a perfert example of how you can still live a normal life while having Lupus, I mean of course there are still setbacks, or changes you have to make.

Most cases of Lupus are mild so try not to be so worried. I would also have a word with your boyfriend if I were you, how supportive is he? you're telling him your concern about possibley having Lupus and he goes on and tells you some story about how some kid hanged himself because he had Lupus.

That kid probably didn't know a whole lot about the disease, probably had no one else to talk to about it, was probably told a bunch of stories like you that his life would be ruined.

05-23-2007, 09:09 AM
"It's obvious to me that if one suspects that they have lupus, they most likely do have lupus. Doctors will delay making a diagnosis or will misdiagnose. "

Starryne - if you have gotten that impression from reading some of the posts, it's understandable, but it's not really accurate. There are over 80 different diseases which can cause symptoms similar to lupus - including, but definitely not limited to - Sjogren's Syndrome, thyroid disease, Lyme disease, EBV, human parvo virus, fibromyalgia, rheumatoid arthritis, chronic fatigue/immune deficient syndrome, primary immune disorders, multiple sclerosis, depression, endocrine disorders, and certain vitamin deficiencies. Part of the reason lupus is so hard to diagnose is that some symptom are common to so many different diseases. Even with symptoms that point strongly to lupus, it's not unusual for it to turn out to be another condition entirely. You cannot and should not self-diagnose lupus from comparing symptoms on a message board - it's a very dangerous idea. You might have another condition that mimics lupus symptoms which could be missed by focusing too much on the idea of having lupus.

Please, if you have not already done so, see a rheumatologist or an immunologist for a complete workup. Until then, continue to live your life just as you normally would. If you want to be a model or an actress, go right ahead. You can take sensible precautions like avoiding sun esposure, eating a healthy, balanced diet, getting enough sleep and rest, and avoiding stress - which are good for anyone, not just people with lupus. Even if you do have lupus, the vast majority of people with lupus have mild or manageable disease, and live a normal lifespan. Worrying about what may happen tomorrow is a pretty good recipe for being miserable today. Lupus is not some kind of automatic death sentence - it's a chronic disease like diabetes, heart disease, or other chronic illnesses. And, yes, it may change your life, but it doesn't have to become your life.

05-23-2007, 09:57 AM
You guys are so great but I don't know if I can go on. I think I have it and I can't live with it. Everyone on this forum seems to handle all of their issues with such grace and strength so I feel like I wuss when I say it but I really can't cope.

The most common thing I hear is, "Just go on with your life" but one simply cannot. How can I? I thought I was a normal, healthy twenty-something a second ago and suddenly my heart may be weaker than my aging parents'...

But thank you again. Even writing this is difficult now as my left arm is feeling tingly and is swollen...


05-23-2007, 10:17 AM

You explain things so well. That was the point I was trying to get across but you always seem to do it so much better!

05-23-2007, 10:23 AM
I have a question about the hair:

Do most people with lupus experience hair loss? If so, how long does it take to come back? Does it ever come back?

My hair is my pride and joy--it's long, shiny and black-brown. In fact, most of my modeling jobs have been shampoo and conditioner modeling in India.

Gosh, I don't even feel like myself anymore...I am beyond scared.

05-23-2007, 10:25 AM
Giving yourself a "life Sentence" before getting an official diagnosis is not an entirely healthy attitude either. No one on this site is a doctor and many of us have dealt with Lupus for a number of years, we are not able to give a diagnosis and you should not do that to yourself.
Marycain has explained some of the difficulties in making a definate diagnosis of Lupus and the reason why the diagnositc process can take so long. No doctor will make a diagnosis without running all of the appropriate tests, lab work and without a complete medical history. You should not self-diagnose without having those results either. You cannot make a diagnosis based soley on symptomology! To be blunt, that is a very irresponsible and dangerous thing to do.
Now, you seem to feel that having Lupus automatically precludes you from fullfilling your dreams. I am sure you know about the models and actors who live with Lupus and yet continue to pursue their dreams (continue to model, continue to work in their craft and continue to live their lives). Why do you assume that, if you have Lupus, you will be an exception and have to then lie down and give up? Where did you get this information from? Wherever it came from, it is completely false. So, I do not understand why you choose to believe what is not true and choose to dismiss the truth? Why do you choose to cling to the most pessimistic untruths about Lupus and choose to ignore any of the optimistic truths?
Having Lupus is not a death sentence (to quoate Marycain), it does not automatically mean the end of your life or your dreams. It will only mean those things if YOU CHOOSE to make it the end of your life and the end of your dreams. So, in short, it will be your choice that puts a halt to your dreams, not having Lupus (even though you have not even been diagnosed with Lupus)
I apologize if I am being short, blunt or untender here. But I cannot let you make these leaps without trying to make you see how wrong you could be and what a huge mistake you could be making. You may be angry with me, that's ok if it means you will start taking control of your life, your health and start making informed decisions.

Peace and Blessings

05-23-2007, 10:26 AM
I only loose it in places around and behind my ears and it is not noticeable at all except to me. Not all people loose it as much as others. Hair loss is also a symptom of a thyroid problem. Like Marycain and myself said before, your symptoms are a lot like other illnesses. You should have your doctor check for other possible diagnoses.

05-23-2007, 10:45 AM
Saysusie (and all the other wonderful people here),

No hard feelings at all--I am only thankful for what you have shared with me...I know I'm being pessimistic and way too depressed about this whole thing but your strong words are helpful--even harsh words are helpful because they're pushing me in the right direction.

I will be touch and let you know what happens (or doesn't happen--fingers crossed) over time.


05-23-2007, 10:59 AM
There was a model on the show "America's Next Top Model" that had lupus and she did not let it interfere with her competition and she did VERY well by the way. Like Saysusie said: Don't give your self a life sentence without all the facts and even then you don't have to give yourself a life sentence. Life is what you make it!

05-23-2007, 12:11 PM

It sounds like you're freaking yourself out here... I understand, because I did it too when my doctors tested me for AIDS. (I don't have it, but for some reason, due to my surgical history, each new doctor tests me.) I freak out and start planning my own funeral and my kids and husband have to put up with me not being rational... and then the doctor calls and tells me that I'm fine... and I am, until the next doctor tests me ;)

So--when you hear that you "might" have lupus, that could mean a LOT of things. Don't shut down your life (or shut out your loved ones) because of this. It's a "might" right now. It's not even a dianosis. Heck, most of us went through years of unknown diagnoses before we got the final one--and usually by then, it's a relief to have a 'name' attached to the symptoms.

Stressing yourself out can cause symptoms that mimic autoimmune disease. If you are convinced that your hair is falling out, and that is a horrible thing, then the stress of your self-convincing can be enough to cause your hair to fall out--even without any illness. You can stress yourself out and cause blood pressure spikes, and headaches. You can talk yourself into stiff joints and blurred vision. So, first, take a breath. ;) Second, find yourself a rheumatologist. Third, (or maybe this should be second) tell your fiance.
I don't know why his friend hung himself after the diagnosis of lupus, but I question the entirety of his "reasoning".

Do not--I repeat--do not-- stop your life for this. My daughter was a "maybe" patient like you, and she has the ANA but no symptoms. She has Raynauds. And--she has a mom with advancing lupus/autoimmune vasculitis. This does not stop her from modeling, from working, from college, or anything.

What do you mean, you don't think you can go on? You "think" you have it, and can't live with it? Why do you think that just now your heart may be weaker than your aging parents? It sounds like you might be misinformed about what lupus really is.

If you are feeling this stressed out, maybe you should consider a serious discussion with the doctor that said you "might" have lupus. Maybe a temporary antidepressant can help you with these out-of-control feelings. I really think you're stressing yourself out... A tingly left arm is probably stress--there is a nerve that will do that when you stress yourself out.

You didn't "used to be" a model or actress unless you quit those jobs. The diagnosis of lupus isn't a forclosed sentence. Even if you do have this (which you don't know yet), you can live a full life. You can act, model, and be married. ;)


05-23-2007, 12:31 PM
I know what you mean about hair troubles, I use to have long glossy hair and now it's thinning and dry. I would so much like to have nice hair, just because I feel that hair reflects your health.

I've been having a lot of success though with using natural shampoo bars, giving myself regular scalp massages and taking flaxseed oil supplements aswell as MSM supplements, along with a regular multivitamin. Believe it or not, using mayonnaise as a deep conditioner really works too.

I also switched to using a wide-toothed comb, and a big natural bristle brush - that really cuts down on the breakage of my hair. You can get some at bodyshop I believe.

Don't be so worried about your heart, I mean yes be concerned about your health but don't sit there fretting thinking that your heart is more aged than your parents. I mean you could just easily have an inflammation of the lining of you heart. It could be something very minor, don't stress yourself about it.

05-23-2007, 02:29 PM
I have Lupus, and I have beautiful, long, glossy deep red hair. It's my wig (I call my wig and wigstand "the vixen" :) ) People do not know it is a wig unless I tell them. My own hair is coming back and it is thick and curly (something I always wanted.)
Losing your hair is not the end of your life. Heck, you may not lose it at all. Many people on here haven't. Nor is Lupus the end of your life. Take some deep breaths, make an appointment with a rheumatologist or internal medicine specialist, and fnd something to do in the meantime to keep your mind from going down paths it should not go--like diagnosing yourself. Breathe.
Love, Kathy

12-20-2013, 10:04 PM
I was just diagnosed today. I actually said to the Rheumatologist - WHAT? I have lupus?
I am still doing internet research as to what it involves and how serious it is. I just had triple bypass in March and have been doing great. Then I had trouble with low iron to the point of having 5 weeks worth of iron infusions. Now this!

12-24-2013, 10:09 AM
I am sorry to hear that you've been diagnosed with Lupus. However, Lupus comes in so many forms and can be from mild to very serious. You did not tell us what type of Lupus you were diagnosed with. Also, if you've read the previous posts in this thread, you will have learned that having Lupus is not a death sentence, nor does it mean the end of your hopes and dreams. With appropriate lifestyle changes, medication, treatment, and care..you can continue to live a reasonably normal lifestyle and can continue to pursue your dreams or to find new pursuits that bring purpose to your life.
We are here to help you in any way that we can. Please do not feel that this diagnosis comes with finality. I wish you the very best.

Peace and Blessings