New here/big decision to make- Help!

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New Member

Date Joined Feb 2010
Total Posts : 18
   Posted 2/22/2010 1:20 PM (GMT -6)   
Hey everyone! I've been somewhat of a silent visitor to this site for some time now, and just never took the time to get an account and speak out. Partially because maybe I didn't think I had anything to say that you all didn't already seem to know.

This is probably going to be THE longest post ever.... so I apologize in advance. Feel welcome to skim/skip to the end...

about 4 years ago I was unofficially diagnosed with lupus. I first went into the doctor after having a bout of extreme fatigue, fever, headaches and sore/stiff neck, and swollen lymph nodes. My PCP tested me for Lyme's disease, but said it was negative. The next week I had summer band camp, and was spending 6 hours in the hot Missouri summer sun every day for a week.... it completely drained me. about 4 days into the week I just crashed and burned. I had a rash on my cheeks, I couldn't remember the combination to the band locker that I'd been using for years, my joints hurt and were visibly red and hot to the touch... still had a fever and no energy.

I'm not the type of person to complain. Usually in the past my mother has had to force me to go to the doctors (I walked around for several months on a completely torn meniscus and swollen knee before I finally went in for an xray/MRI). I definitely didn't want to go to the doctors again so soon... but my mom dragged me, and my doctor took a wide panel of blood tests. (lucky for me I don't have a problem with needles!)

When the test came back with a positive ANA and some other numbers that were askew (I don't exactly remember which mom has it written down somewhere), he recommended me to a rheumatologist. Made an appointment, but the first opening was a month away. So when it finally came I was feeling better. Sitting in the rheumatologist's office I had a huge survey of "in the past 3 months have you ever felt ____ or had ____" survey to fill out.... and an alarmingly high proportion of the questions my mom and I had checked off as things I had recently experienced. When I saw the rheumatologist, the visit was short. He asked some questions and tested my range of motion- which was good, because at this point I was feeling completely healthy. He said he could run some tests but that they wouldn't do any good because they most likely wouldn't test positive unless I was showing active symptoms.... but that he felt he could honestly say just from talking with me that he was as positive as he could be without the test results that I did have lupus.

I had a follow up exam with my PCP to discuss the option of scheduling another appointment with the rheum.... but he ended up suggesting that I wait to be diagnosed. He agreed with the rheum. - he too found lupus to be the most probable diagnosis, but he told us that being diagnosed would hurt me when switching to my own health insurance, if I wanted to go into the military, it could even affect getting a job if employers saw my unreliable health as a problem. His suggestion was to live a healthy life, limit things that appear to produce flares, and just make regular doctors visits if anything extremely unusual showed up (pain that could suggest kidney involvement or pleurisy...). We agreed with this at the time, because I was kind of scared of the limitations that I might be faced with.

For a while it was pretty easy to skirt around flares by managing sun exposure, diet, exercise and sleep (my PCP prescribed sleep medication at one point because my lack of sleep was causing some symptoms), so I thought "Ohhh yeah, I can do this myself. I don't need loads of medication to keep this under control".

I am now in college and constantly battling stress trying to fill out internship applications and the GRE, etc. My health has become a wreck. It seems like 80% of this semester so far I've been waking up with stiff joints or a migraine or some other random symptom that makes me feel like absolute crap. It's affecting my focus and making it especially hard to get up for my 8 am classes (the only time physiology is offered at this huge university, go figure.) and the symptoms just seem to be getting more intense with less time in between occurrences.

It's difficult because I have tried talking with a couple of my professors and for the most part haven't been received well. When they ask why I haven't told student disabilities services about this and gotten an official compromise worked out to work around my health issues, I have to explain to them that I haven't had it officially diagnosed (which student disability services needs). They don't take me seriously, thinking because it's not diagnosed I'm just making it up. cry

I'm in a competitive program and I'm afraid that my health problems are going to get in the way of me succeeding in getting the degree I'm after, and eventually-- the job. ( I'm currently in a combined BS/MS degree for Dietetics and Kinesiology- I want to be a registered dietitian and do research in how diet and exercise can help prevent and manage chronic diseases :-) ) but lately it just feels like at the rate I'm going I will never get there.....

SO- my question is... does having a lupus diagnosis really affect insurance rates when applying for a new company (I'm currently 20 and still on my parent's insurance but will need to switch eventually)? Has anyone had a problem with future or current employers not being understanding of the disease?

Should I start the process of getting it actually diagnosed (knowing that it will probably take a while anyways..) or should I wait? I'm also now 5 hours away from my family doctor and the rheum. who thought I had lupus... so who knows if the doctors here will be of any help..

K. my fingers hurt now. Sorry this was so long, and thanks for ANY suggestions.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 2/22/2010 2:18 PM (GMT -6)   
Yes, having a diagnosis definitely affects your ability to obtain and keep health insurance. Unless you are on a pre-existing policy or a large group policy (a group policy is what you'd get through an employer) your rates will be through the roof.

However, if you want to attempt to get Social Security Disability, you'll want the diagnosis and the full support of your doctors.

So sorry your professors demand you go the official route -- that only adds to the stress. ANd stress is most likely what is causing your symptoms to become more troublesome.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Feb 2010
Total Posts : 1
   Posted 2/22/2010 3:42 PM (GMT -6)   
I'm sorry to hear about your health, but I'm glad to hear that you are moving forward. I was diagnosed with lupus my freshman year in college (1997), and like you, I found it difficult to continue with "normal" life. All I can say to you is that "normal" is what we make of it. It took me ten years to complete my BA, but I did it. I was diagnosed with lupus nephritis in 2001 and underwent a year and a half of monthly chemo, followed by a year and a half of peritoneal dialysis, another year and a half of hemodialysis, and finally a renal transplant. During all of this, the one thing that kept me going was my dream of graduating from the university. I have now been with the same company for over three years and they have always worked with me in regards to my lupus and the complications associated with it. Just be honest with your employers (after you have the job). There is no need for you to disclose your illness prior to that. Keep good notes at work in case you ever have to be out for a long period of time so that someone can easily pick up where you left off. This also keeps you sane while you're away because you don't have to worry about all the work that will be waiting for you when you return.

Good luck in your future endeavors!

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 2/22/2010 4:35 PM (GMT -6)   

Lynnwood is 100% correct in stating that having a diagnosis will affect your ability to get medical insurance. After my diagnosis I was turned down by 3 insurance companies and finally had to go to the state run High Risk Insurance Pool and pay $936 a month for insurance that has a $2,000 deductible.

But my question to you is why are you not being treated. Being treated for your symptoms is much more important than having a diagnosis.

I understand that you might be in a hurry to get your degree and get on with a career, but don't forget to manage your health in the meantime. If it takes you a few more years to graduate because you aren't stressing your body, it will be worth it.

Hang in there and join us here more often!

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 2/22/2010 5:42 PM (GMT -6)   
You need treatment if not a diagnosis because left unchecked the disease will progress and cause damage, damage that cannot be undone. I am sorry, but you need to be under a doctor's care. You can go back home and see the doctors who believed you have lupus or you could have your records sent to a local doctor. The thing is you need a lupus specialist. A diagnosis will make getting your own insurance expensive but lack of one makes getting treatment difficult. I wish you luck in your choosen path and really wish you had more supportive instructors. I am having to withdraw for the semester due to lupus related issues.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

New Member

Date Joined Feb 2010
Total Posts : 18
   Posted 2/22/2010 8:48 PM (GMT -6)   
Wow, Pat, that's an eye-opener!

And you and redrose both bring up a good point: I should be taking better care of myself and be getting treated whether or not it's officially diagnosed.
Tomorrow I am making an appointment with the student "death" center (as the students here call the health center)... not for an actual appointment, but because the doctors there would be able to help me find out my options in terms of local doctors.... and I'll go from there. I know it's wrong and I need to get used to it, but I just hate making a fuss. I can have a list of symptoms in my head and then when I get to the doctors for some reason I always talk myself out of some of them: "oh that sounds like I'm just whining..." "oh that's not important".
Probably one of the worst things a patient could do.

I guess right now what worries me is the fact that the only reason I'm at college right now is because of my scholarships, which I would lose if I drop below full-time status (though I'm taking the lowest amount of credits I can to still be considered full-time). But it's beginning to be very clear to me that some things are just going to be out of my control. Taking time to do things in the way that is best for my health might slow me down... but trying to push through it just because I don't feel like I have any other option will probably eventually start taking my options away for me.

It's scary to think that I might be needing to worry about health insurance before I even have an actual job to pay for it. sad

Redrose: I'm sorry to hear that you're having to drop out for the semester. I had a friend who took last semester off because she was having horrible stomach problems...and then she got kidney stones on top of it all. I guess life just throws those curve-balls sometimes....

Veroyvonne: you bring up very good points. I guess it never really occurred to me that I would have no reason to need to tell employers about my health until after being hired. especially if I kept up with notes as you suggested.

Lynnwood: would large-group policies cover pre-existing conditions such as lupus?

Thank you everyone. You've all been so helpful!


Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 2/22/2010 9:55 PM (GMT -6)   
Would large-group policies cover pre-existing conditions such as lupus?

It all depends on the size of the company and what they have purchased in the way of group insurance. Some waive all pre-existing conditions, some have a waiting period of 6 or 12 months, etc. I don't think they can totally refuse to cover you.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

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