Today I had my first experience with total and utter ignorance from a medical professional concerning SS. A visiting nurse comes and takes vitals from the tenants in my apartment complex once a month as a community outreach. She actually said to me that I should stop worrying because "Yes, Sjogren's is an autoimmune disease but it is nothing more than an inconvenience." I was floored. When I started to inform her about the truth about Sjogren's; the pain, flu symptoms, confusion, liver problems, etc., she acted as though I was making it all up. I even told her my rheumy said that those with SS were 44% more likely to get lymphoma and she rolled her eyes.
What do you do when you experience the ignorance of others? I'm reasonably new to this disease. Although I have been sick much of the past 3 years, I didn't know what was wrong until a few months ago. I am already fed up with people treating me like I am making it up. I need advice please.
People can definitely be very ignorant when it comes to SS. Especially since it effects everyone in such completely different ways. I am always seeing new symptoms on here that I have never heard of before and they are quite diverse. It’s hard to educate everyone. I’m trying to just accept that others have different views and let them be, however to be honest, once in a while I do feel the need to get defensive
I'd roll my eyes too. The incidence of lymphoma is 19.7/100,000 with SS it is 25/100,000. Lets offer some perspective 1/800 have a fatal heart attack every year. If you are obese its in 1/400. How much time does one spend telling others or worrying about heart attack.
The symptoms are real but not always SS. If you told your neighbors you had breast cancer, they would be bringing you casseroles and having bake sales. Its because there is a pretty certain outcome or at the very least a pretty ugly process of getting there if it does have a positive outcome. An autoimmune disease is different.
1 in 12 Americans has an autoimmune disease. EVERYBODY knows somebody with an autoimmune disease and likely is related to someone with an autoimmune disease. 9 of 10 folks live just fine with an auto-immune disease. The have aches pains symptoms of all sorts some are even more severe.
Not defending your "ignorant nurse" but do you have a clue as to what other patients she may have seen in her rounds or what they are facing? Frankly even severe SS (which I have, I just got rid of a feeding tube in time for thanksgiving because the inflammation from the glands in my neck were so inflamed I was unable to swallow so was on IV infusion of fluids and steroids) is nothing more than an inconvenience.
At least it is compared to what my PsA has done to me. Not so many years ago I was on a heart transplant list due to congestive heart failure from my arthritis. Thanks to some great docs and "miracle" drugs the process was stopped and some very intense cardiac rehab got my heart back to near normal, Which was a good thing because we schedule joint replacement every 8 mos.
Heres the thing to keep in mind with autoimmune its not the autoimmune disease, its what it does. Three of the girls in my granddaughters JIA support group have had kidney transplants in the last 18 months. It was kidney failure not arthritis. People understand the concrete and what people are experiencing at the time not what they could be experiencing or what they are experiencing that isn't particularly "overwhelming"
I'm not a glass half empty or half full person. You need to understanding this world there are the analytical types who just wonder why in the hell they built the glass twice as big as they needed to. We also don't waste one minute worrying about what others think. We have no clue what their perspective or experience is. That nurse could well have just given a 30 year-old single mom with 3 kids throwing up her toe-nails a shot to control nausea from her chemo for stage 4 breast cancer.
tj1, i'm sorry if you found my post so annoying. i never said i was worse off than anyone else. i wasn't whining here. I also wasn't whining about my condition to the nurse either. I KNOW there are millions in the world who are much worse off than me. I KNOW my condition isn't the worst in the world or even in my own apartment complex. I wasn't even trying to get empathy from the nurse. I was correcting her for giving misinformation saying SS was nothing other than dry mouth and eyes.
I wasn't trying to get empathy or sympathy here either and i sure as heck don't deserve the "You're so ungrateful" type speech. I simply wanted to hear how others on what they would do or say. I am sorry you and your family have gone through so much but please don't take it out on me other or others here. I did not deserve your lecture by any means and i will not be posting her again. thank you for showing me how i would be treated here.
p.s. the nurse is a sales rep for a hospice. she doesn't practice anymore and does the bp testing here only for community service. so you scenario about her is wrong.
Jonchri I hope you don’t leave the site, there are some really great people on here. tj1, sometimes your posts can come across as quite offensive
Wasn't annoying to me a bit jonchri. Your perception of where your disease is doesn't match others. You will beat yourself to death expecting anyone to understand and "educating" them is very unlikley. It just doesn't happen that you can change their perceptions or attitude.
There are multiple factors why this doesn't happen. The bottom line is while I gave you many reasons why it might not happen, there are plenty of others. Its just not worth it to you in the long run. Like it or not your efforts are usually going to be misunderstood.
I get what may be going on as do others here but I also see a lot of unreasonable fear. The reality is enough to deal with.
As far as the nurse goes I can assure whether she is retired or proctoring hospice, she has seen much in her career even if it wasn't the patient before you. BTW hospice services are sold to folks who are in a pretty bad way. Its a tad longer than 6mos, but still only to terminal patients. I'm guessing the rest look pretty good to her.
Anyway you asked what do you do, and I answered. Nothing because it usually turns out badly.Hi, I understand how horrible it can feel when some medical professionals do not understand what you are going through. Most of the doctors that I have seen believe that sjogrens is a dry mouth and dry eyes and nothing more. I used to feel devestated when these doctors treated me as if I was mentally ill when I asked for help because I was finding it difficult to cope with the fatigue, joint pain etc. It was extremely difficult when I was first diagnosed and had very quickly changed from a very active person that enjoyed long hikes, into the new me that struggles to walk at all alot of the time and hasn’t the energy to do anything alot of the time.
On the whole I have come to terms with the unhelpful comments from the doctors and don’t bother talking about my sjogrens unless I really need to.
I enjoy different things in my life nowadays and am generally a muxh happier person than I was before the sjogrens.
Everyone is different and I’m sure if you stick around you will find others here that understand how bad you felt with the nurses reaction to you.
Take care x
Hi jonchari,
I understand your frustration. There are few who really do understand the complications of a systemic autoimmune disease. It is not really uncommon to encounter nurses who know little to nothing about Sjogren's. Fortunately I have a GP who actually thinks SS is under rated in my diagnosis.
My Rheumatologist goes by the joint damage he can see with each exam and x-ray and of course our conversations, and acts accordingly with what he finds going on with the PsA. By classification it is considered my primary and is treated rather than the Sjogren's.
Having two systemic autoimmune diseases, it's difficult to say which disease is a to work sometimes. Of course the joint damage is PsA, the dry eyes and mouth, sore glands are Sjogren's, but that is just the beginning, as we all know so well.
Sorry you were treated this way by a nurse, it's not uncommon for Doctor to address us with the same attitude, and of course that does not make it right. Does she answer directly to your Doctor?
I hope that you can get this straightened out.
Wishing you well,
SK
Dear jonchri,
Sometimes to calm our fears, others try to make light of what Sjogren's is. In my opinion, that approach is more upsetting than reassuring, however I feel that a Rheumatologist discussing a possibility of lymphoma or any other such alarming medical challenge that 'MAY' occur is catastrophizing. By going into what Sjogren's 'may do' is essentially adding to distress and illness. They are supposed to determine what 'IS' happening with each patient.
I know that the years of distress and illness we typically go through before we get diagnosed are frustrating and upsetting, only to finally find that what we have is still considered a 'syndrome' rather than a 'disease'.
If you are new to this diagnosis, new to this Doctor, the very best thing you can do is to deal with what is actually happening. I not only fill out a detailed questionnaire, but submit a list of symptoms, recent problems for him to add to his records.
As for the nurse taking vitals, I would not even discuss this with her, but instead with your Rheumatologist.
I hope this comes across with the kindness and concern that is intended.
Wishing you well,
SK
Jonchri, I totally understand your frustration. Its upsetting to be blown off by someone who is supposed to be in a helping field. I do trauma work and if I told a client to "get over it already" I wouldn't have a job by the end of the day. It doesn't cost people anything to be kind. I have also been in the spot of pressing people about all of the things that could happen because it seems necessary to get in order to get it through their head that its more than an annoyance. Hang in there....like any field there are good and bad. It just stinks to run across them so often. LOL
I just have to say something about this.
jonnchri, I completely sympathize with you, and I feel so sorry that you had to deal with such an idiotic person who should know better. Sjogren's Disease is a hell of a lot more than just an "inconvenience" !! An "inconvenience" is getting a flat tire. An "inconvenience" is missing a train, or your pizza order arriving late. Sjogren's Disease, on the other hand, can completely change your life into a living hell. When this disease hit me suddenly, I became nearly bedridden. I was so tired all the time that I could only leave the house for 30 minutes to an hour at the most, and then I would have to sleep most of the day. All my joints started hurting. Then I suddenly started getting shaky and nauseous at times, for no reason. Then my feet started getting freezing cold. My short term memory was shot. I was getting pounding, horrible headaches every day that almost made me cry. I'm a young man, 37...and I had to tell my friends every day I'm too tired to hang out with them because I'm laying down in bed, wrapped up in a blanket like a cocoon, feeling like I'm dying. An "inconvenience"?? HA! The dry eyes and dry mouth were actually the LAST symptoms I got. It started affecting my whole body long before then. And did I also mention the times I kept zoning out and my speech was getting slurred?
And unfortunately, the completely ignorant and belittling attitude that nurse had is the attitude most nurses seem to have. They don't know what the hell they're talking about. I'm so completely fed up with it.
By the way, Tj1...there was absolutely no need for your attitude. That attitude is part of the problem. You came off as a real...well, I'm not going to say it. I would like someone to try to tell me to my face that this hell I've been living through is just an "inconvenience." What part of SYSTEMIC disease do people not get?
I said dealing with the attitude is a waste of time and attitude and changing perceptions of those around you is a complete waste of time and effort. I said nothing about inconvience or not. Perceptions will vary compared to what people deal with.
As far as what people don't get about systemic disease. The common cold is systemic. With ours I wonder often what people with it don't get. Few go extraglandular, few get granuloma, few get vasculitis, even fewer get cancer. Reading here, you would think everbody does. If you expect people to suddenly understand what your diseases is by telling a hospice nurse, you have bad disease because you might get cancer, you are going to get blown off as being "dramatic" Its that simple.
80% of this disease is SICCA. That in and of itself leads to some very serious effects including some you described. I had my first SS related surgery at age 15 (granulomas.) People understand that. They understand bleeding ulcers from SICCA. They understand an arm that turns black from purposa, and on goes the list. They don't understand what they can't see. Other peoples attitudes is not part of the problem. If everone you came into contact offered you the proper amount of sympathy, and showed the correct attitude, you would still have a huge problem to deal with. You have SS, its fine to vent with others who understand occasionally. Its not fine to be constantly as happens here WAY to much to be constantly throwing up worst case scenarios, catastrophasising, or coming up with possible adverse events as being near certainties.
Dealing with what each has got is plenty. Hoping everyone around you is going to rally about you (or understand) just isn't going to happen. You no clue what they are facing in their own lives, just as unloading on me how horrible this disease is for you, you have no clue whether you are having the effect you think you are OR I'm sitting here saying wow, is that all? I could live with that.
More productive is to look at the name of this group (at least the first 2 words) "Living With" We have no choice so we might just as well deal with what is and help eavh other strategize ways around it. Our shared experieces in do so are helpful. Our collective anger that others don't get it is not. That in fact us NOT helpful.
Actually, Tj1 you said in your own words (and you even underlined them, if you'd like to refer to your own reply again) that "Frankly SS is nothing more than an inconvenience." Would you like me to send you a screen shot?
And this has a hell of a lot more importance than just attitude. If there is a prevailing myth that Sjogren's Disease is just an "inconvenience" with just dry eyes and dry mouth, then it won't be given the serious research attention it needs. And patients won't get the help and treatment they need. So many people have to suffer with it for years because doctors and nurses don't take them seriously, and either dismiss their symptoms as being from "anxiety" (like what kept happening to me) or even if they do think that someone has SS, they downplay it and may not even treat them because they still ignorantly think that SS is only dry eyes and dry mouth. I haven't talked to a single person with SS who only has dry eyes and dry mouth. I wish that was all I had!
And what you failed to realize is that IF all the doctors I had gone to DID give me the help ("sympathy" as you call it) then I wouldn't have had to suffer with this for over a year. You think my symptoms are no big deal, and oh, that's "all" I have. You say you could live with that? Then fine, you live with it. So I can have my life back. And spare me the ungrateful speech, because it's not going to work on me. I've been through too much to take crap from anyone. For every person who might be worse off than me, there are also 10 others who are better off than me and don't have to deal with this. There are people out there mountain biking and going to the movies and partying, while I was too exhausted and in too much pain to leave the house.
Frankly, Tj1, I'm done talking with you. I'm wondering what you're even doing here, actually. If Sjogren's is so not a big deal for you, then you don't need support for it, do you?
Yep, I certainly did say that followed up by: "At least it is compared to what my PsA has done to me. Not so many years ago I was on a heart transplant list due to congestive heart failure from my arthritis." I'd say that is somewhat more significant than my SS symptoms. But guess what I live with now? Again you read what you wanted to make yourself feel better, thats fine, But when was the last time you were dependent on feeding tube and IVs for your hydration and nutrition because of your SS which was the next statement. I have a very heavy disease burden. Like anybody else it is what it is and I deal with it.
The only prevailing myth about a disease of "inconvience" is among SS patients who are very justified in being frustrated with the lack of treatment options. It may give them some comfort to believe Nobody knows. nobody cares, nobody understands but it doesn't help them. It also prevents them from getting the best help they can and seeking out the best options for their disease.
For example anxiety. Funny thing about that is its true, now whether it is the cart or the horse anxiety is a big part of SS. (there is a large school of thought believing many mental illnesses are autoimmune based which makes sense as pharmacology has had more effect on them than any amount of "therapy") The fact is the vast majority of patients with seronegative SS receive significant reductions in all symptoms including SICCA and Fatigue when treated with anti-anxiety meds (and in some cases tricyclic antidepressants) Do you know how many patients quit listening at anxiety?
Not all doctors an not all nurses think SS is a non-disease. I'm sorry yours do perhaps if ask here someone can point you in the right direction or share what they have done to fight the fatigue. It might be more productive than attacking someone (and proving they were right) for suggesting that worrying about changing what can't be changed is unproductive and makes a bad situation worse.
As far as not a big deal, those are your words not mine. Its a big deal every day. Meds, yoga, measuring hydration, PT, pool work, diet, supplements, exercise, extra hygiene (eyes and oral) I can write off about 3 hours add in the time spent on several online support groups it really goes up. I have manged to integrate much of it with my regular life so its less of a burden, but fighting back is a big deal, fighting back with others is a really big deal. I don't need symmpathy
Gateway, I have known tj for about a year, but he has been helping our members for much longer. He is not here to get support; he is here to give it. The support that he gives is not commiseration. It is practical support and the type of knowledge and perspective that is empowering and can make a material difference in people's lives.
Sometimes the message and assistance offered may not be delivered with a soft bedside manner. But if you start with the understanding that tj has helped make hundreds of patients' lives better on these communities, and that helping patients is his sole purpose here, it may help you re-evaluate his message. Re-read a couple of days later when emotions have settled and see if it reads differently. And, take a look at some of the other discussions where tj has participated and see if his comments have been helpful.
This is all starting to feel a little to attack-ish (sorry I couldn’t come up with the right word) we may have already lost jonchri (I don’t know as I am not sure how to tell) I don’t want to lose anyone else. This is the first place I have ever felt immediately welcomed and not judged, I don’t want to lose that. Tj1 your medical knowledge is amazing and I think you are a valuable member to this group. Gateway, your emotions are so real and wonderful to see I actually reared up reading them because I know how this pain can effect every aspect of your life. You guys are amazing, everyone here is amazing!
I mean teared up, oh my gosh, why oh why can I not edit 
I agree, Angie. I don't want anyone to leave either. And I don't want anyone to feel attacked. I think understanding each other and just remembering that we are all in this together is all that is needed.
Jonchri is still here, Angie. :) Send her a friend request. You can type her name in the search box to find her page.
Dancermom, I don't see how Tj1 can be of help when he has the exact same attitude that too many doctors and nurses have when it comes to autoimmune diseases. This has absolutely nothing to do with "commiserating" or "sympathy" which I thought I had explained. It has to do with the very REAL implications of what happens to people when doctors don't listen to people who are dealing with this disease.
How many times has it been said on this website that people often have to suffer for years before they get a diagnosis? How many times have people told the same experience they've had, where they keep going to different doctors, trying to get help but their symptoms keep getting brushed off as being from some kind of psychological problem. Or even if the doctors concede that the patient has Sjogren's, they don't put much effort into treating them because they don't think that Sjogren's is that big of a problem.
I thought the purpose of this website was to support people who have Sjogren's Disease, but also to let the other people know about how it dramatically affects people's lives. I don't see how perpetuating the myth that Sjogren's is "nothing more than an inconvenience" is helping that.
Jonchri was completely right in trying to let that nurse know how Sjogren's truly affects people. It has nothing to do with trying to get sympathy...it has everything to do with trying to get people to understand that this is a serious disease which needs to be researched more and be given more attention, so that maybe we can get better medicines and hopefully someday a cure! Now, if people stay totally clueless and doctors and nurses keep laughing it off as just an "inconvenience" or as if the only thing to Sjogren's is dry eyes and dry mouth, then how the heck do we expect to get anywhere?