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View Full Version : No one believes me ... Really frustrated today.



SirLupAllot
10-09-2009, 09:39 PM
Hi all,

Just wanted to stop by and I guess discuss some frustration. I have been sick for a year and half and still waiting for a confirmed diagnosis; like many of you.

It is really getting frustrating that NO ONE believes me. I have been very selective in whom I have told ... I haven't told any co-workers or anyone from work .. haven't told casual friends ... I have only told my immediate family and 5 or 6 very close friends. But even my closest 'support mechanism' (for lack of a better term) do not believe me. I believe they really think I am making it all up and they do not think I am sick at all.

My father was one who exaggerated about his health ALL the time. If he had a cold you would have believed he was on his death bed. I think this adds to my challenge because I think they think I am taking after him.

They make comments like: those symptoms could be anything; you look fine; what makes you think it is Lupus?; I know someone who has that and they have been just fine for 20 years ... etc, etc, etc. NO ONE has even said one time, Oh I'm sorry ..that must be difficult; is there anything I can do .. NOTHING like that.

My friends recently moved from a 5 bedroom 3,000sf home and I was the ONLY person who they expected to help them. I told them well in advance that I couldn't do much .. I told them I couldn't go up and down and stairs and I couldn't carry heavy things because of my shortness breath. They made fun of me and acted like I was faking it. All while my buddy's TWO PERFECTLY HEALTHY brothers sat on the duffs at their homes and wouldn't help.

A good friend of mine was recently in town and he kept asking ... 'what's wrong with you now ?? How are you feeling now? What hurts now? ... He was thinking there was nothing wrong with me so he thought if he continued to ask that I would say "nothing is wrong .. I feel fine" ..... I finally told him, I could call them off to you as the random pains, etc happen .. but within an hour you will tell me to shut up.

There are times that I have to almost gasp for breath and during those times I feel like my heart stops for a brief period. To be honest, it's quite scary ... and it makes me really appreciate life .. but I wonder sometimes if I am going to take my last breath .. it's that bad.

I don't think they have taken the time to even search for what symptoms are or review any of the online resources. I think they think my shortness of breath is from my prior smoking ... and I think they believe the only thing wrong with me is some of the skin problems .. they've only seen 5% of skin problems .. haven't even taken the time to ask what else or other symptoms.

Anyway, I appreciate you listening .... THANK YOU SO MUCH for all the support here ... I really like comming here because no one ever questions me. I feel like I am constantly trying to PROVE myself to my friends and family.

VERY FRUSTRATING. :rant:

Tamy
10-09-2009, 10:05 PM
SirLupAllot
Have to say, love that name.

Well,I haven't been diagnosed yet, so I haven't really told anybody what's going on. My husband knows, and a few close friends, but they don't seem to be taking it too seriously either. So now I just do things at my own pace, and if they don't like it...Bad Luck! I know it makes you feel bad when the people you have confided in don't really seem to notice your pain, maybe try explaining to them what lupus is all about, and show them proof of how lupus on the outside, might make you look healthy, but on the inside, makes you feel like crap. The "spoon theory" is a great example of this.
Well, for what it's worth, we know and understand what your feeling, because we're all feeling it too. This is a huge problem people with lupus have, because most the time, we don't look sick.
Hope your having a good day
Tammy.

jcg196
10-09-2009, 10:07 PM
Hi SirlupAllot,

Unfortunately ur story sounds too familar. I am sorry you are going through this. It sucks that people don't take you seriously.

I have learned that you have to always look out for yourself first and that if your friends or whomever aren't going to be supportive even thou it hurts u have to distance urself from them.

It took my family a long time probably 8 years to believe me, including my husband.

Hang in there, what u are feeling is real and don't let anybody make u feel crazy or feel worse for what u have.

Take care!!!

SirLupAllot
10-09-2009, 10:15 PM
Thank you Tamy and JCG ... you are EXACTLY right .. it's that they don't take me or the disease seriously.

Thanks for the reminder of the spoon theory ... I have to look that up again and refresh my lupie Brain.

Sounds like you guys have faced the same challenges .. I have to adopt Tamy's theory ... "BAD LUCK ... POUND SAND". ... And JCG, I agree with you as I find myself distancing myself from them. I went for a period of over 2 weeks without calling or answering any of the calls from one couple because they just don't believe me. Grrrrrr..

thanks !!

Angel Oliver
10-10-2009, 04:36 AM
I am so sorry to hear your story and yes its all so familiar as members say.I am in a similar situation and at Christmas was diagnosed with Lupus then when blood results came back he took the diagnosis off me which angered me and i have told him so.I am now being tested again.
Only YOU know your own body....so listen to it.Try not to let friends and family make you feel like you are not sick when you are.Try and always be truthful to them,say when you are feeling bad and let em all know.It hurts when our loved ones do not understand the many many symptoms we get i know im living right there with ya on this.But just know one day you will get your diagnosis,but like me it takes time.
In the very beginning for me,i was told i had a nervous breakdown.Now i know from recent changes of Doctors and the diagnosis i have Raynards,IBS,Acid reflux,Fibromyalgia, Sjogrens,Asthma and living with a temporary label M.E Chronic Fatigue Syndrome until tests come back eventually. Even when all my hair fell out people just said its stress :)
So just hang in there or change Doctors like me,but try and not let your loved ones get you down,you know how you feel.Maybe get leaflets on Lupus and give them all a copy,anything to help you explain why you feel the way you do.
Keep the hope and know we all soooooooo understand you my friend.

Love n hugs
Amanda.xxxx

abbasgirl
10-10-2009, 07:35 AM
(((((((Hugs))))))))

I hear ya too...and I feel the same way about this place. Saysusie and everyone, thanks again for giving us a place to go where we don't have to explain ourselves or prove anything. It's such a safe place!

I've stopped explaining anything to friends and family unless they ask and even then I hesitate and weigh things. With some people, I know that if I share all the details, I'm bound to get certain looks or reactions I just don't care to see or hear anymore. I've grown very touchy about it and know that if I get that "look" or hear those stupid theories of theirs, I'm bound to shoot off at the mouth. Which... all that does is create stress. It's easier to just give a pat answer sometimes and blow it off.

I've stopped completely from explaining why I can't do certain things anymore (unless someone just doesn't know and it would be news to them) and if it hurts someone's feelings that i can't help them with something heavy, well...I'm still learning to not allow myself to be tortured by that. But I'm learning :cute:

Real friends and family that really care are the ones you don't have to explain so much to or anything to. They ask about you because they want to know what's going on, not why you can't be the friend or family member you used to be to them and would like an eta of when you can return to that position again. People who really care hear you, they listen, they learn, they understand or learn to understand. They've taken the time to get to really know you and know when you're sick or something is wrong just by the way you look or act. They understand and they wouldn't dare tease you about it or try to push you into doing something that would make you feel worse.

We often don't have the energy for dealing with difficult people or selfish shallow minds and we shouldn't have to in the first place. All it does is stress us out and even if it's a little stress... it's stress we sure don't need. The effects of stress that give our healthy friends and family headaches or such can be tamed with otc products most of the time. We end up with migraines, ibs flares, stubborn rashes, hospitalization, etc...

This disease has been showing me, and continues to show, who in my life really cares and I can have a healthy relationship with. It's heartbreaking but at the same time it can be freeing also. I've lost some family and friends over the years, but they never really were family or friends. It was sad to go through but I'm thankful I don't have that "drain" in my life. Know what I mean?

Distance is great advice and also like I've been advised here myself...surround yourself in positive understanding good people and things. You need as much of that around you as you can get. And remember...we love ya'! :hug:

rob
10-10-2009, 10:04 AM
SirLupAllot,

Man, I can understand what you are going through. I had a similar experience with nobody believing me, even after being diagnosed with SLE and approved for full Social Security Disability. People are strange. Folks who knew me for most of my life, started talking about how I was becoming "lazy", or slipping. They accused me basically of trying to get out of work. What made no sense, was the fact that I was the business owner, I WAS THE FRIGGING BOSS! I had made it finally, and had my dream job. I was making substantial profits and living a lifestyle I could only dream of before. I was there 60 hours a week, I loved it, yet people like my father called me lazy.

I now know that my father was in total denial. Others, friends, I guess they just couldn't deal with it. I was too young, too much like them. The only person who did believe me was my soon to be wife, and her famous last words were "I need someone with a future, not someone who will just be dead in a couple of years". Nice.

I reached a point where all I had loved, and worked for, was gone. My friends stopped coming around. I was alone and without hope, and I tried to end it all. Damn near succeeded. Luckily I lived to go on with my life.

I'm not saying you are at this point at all, I just don't want to see you, or anyone else, ever reach that point. I finally laid down the law with everyone, including my Dad. If you do not believe I am sick, then I want nothing more to do with you. I told people that I was moving, and they would no longer be allowed in my life. No forwarding address, no phone number, no E-mail, no Rob. Fortunately, those most important to me, finally took me seriously, and I have had nothing but support, and understanding since.

I hope you don't have to be so brutally blunt as I had to be, but you need to tell people in no B.S. terms that you have a health problem, and you need their understanding. So your father used to exaggerate. You are not your father. So they "know" someone with Lupus who is "fine". What a crock. I really know quite a few people with Lupus who are far from fine, and a few, who are no longer with us. You are doing the realistic, and healthy thing by not ignoring your symptoms. And the most important thing you own, is your health. You have taken responsibility for yourself, and nobody has a right to criticize you for taking care of you. I certainly hope that you do not have Lupus, but it's obvious something is going on with your health, and you need answers. Lupus can be controlled, and it can be lived with, but you first need the diagnosis.

I don't know what you should do, or what you should say to convince people, only you can determine that. Just know that you can come here, and nobody will ever, ever dismiss you or your symptoms. Nobody will ever doubt you, and many, if not most of us, have been where you are now. Let the unconditional support and understanding you find here, make up for the lack of it in your face to face daily life. Hang in there.

Rob

DrinkofWtr
10-10-2009, 10:21 AM
People don't believe I have lupus either. The famous phrase "you look so good" has permeated my life.

Check this out. My boyfriend has a severed tendon, and has carpal tunnel. He keeps telling people he can't help lift things, move things, or use his hands right now, but that doesn't keep people from asking for favors, like "Will you weld this for me." He just has to be like Nancy Reagan, and "Just say no."

justomegirlindallas
10-10-2009, 10:34 AM
so, whats your back story? When were you/how were you diagnosed with Lupus or what made you take that Lupus diagnosis? I'm asking because I experienced much breathlessness and went through a lot of what youwent through. I ended up needing cardiac bypass surgery. Not saying you need that, but even with lupus, your symptoms as vaguely as I can discern from what you've written makes me want to ask what (if any) cardiac testing you've had done.

Bonita
10-10-2009, 11:28 AM
Sometimes it is hard for anyone to take you seriously because there are no outward signs, and in the process of getting diagnosised i really had my own doubts if this was in my head or not. Some days are really depressing and others are not. I have been diagnosised with lupus, myositis, r arthritis, renayauds, barrotetts esophagas and gerd, digerenitive disc diease and have a titanium cage at t-11 and t-12 with plates and screws and asthma but i look forward to getting out of bed each morning and helping to raise the last of my 5 grandchildren I thank God for His blessings everyday and i put all of you on my prayer list. Love Bonita

Karenlee
10-10-2009, 02:44 PM
This was a great thread-it seems like everyone in our position has the same exact experiences when it comes to others understanding what lupus can do to your body. I don't talk to some of my cousins anymore because that is the same kind of treatment I got-"u look OK" or one of them always saying "well what about your lupus" brought up in every conversation like I was making it up. I finally decided to not even mention it anymore to anyone, just do what I think is best for me and go on with my everyday life. I don't need the added aggravation from a bunch of illiterate idiots. Mental well being is a great med-better than any prescribed by half the quack rheumatologists out there. I had one I was sent to in the early stages of systemic, before I was officially diagnosed tell me-it's mmy age, the weather, live with it!! No blood work, nothing. So guys, I agree, we are our own advocates-you're all great. Karen Lee:cute:

Bonita
10-10-2009, 04:34 PM
I am very fortunate to have a very good and understanding rheumotologist i wish everyone had one. Bonita

SirLupAllot
10-11-2009, 10:30 PM
Thank you all for your replies .... I appreciate it greatly.

Truly the greatest thing about this site for me is that I don't feel like I have to prove myself to anyone here. What a relief. There is also allot of learnings here and allot of really great support. Thank you to all of you!

Wow Rob, you have been through allot. I can tell that it has all made you a stronger person. Thank you for all of your comments.

I actually feel ALLOT better today. I typed up an email and included 2 videos and a link to mayo.com to give them an idea of what Lupus is. I sent it out to yesterday to the people that I have told about this illness and I hope it will at least let them know that this is not a simple illness I have .... This is not like a head cold .. it is a serious matter.

I think they will understand better now ... one of the videos even referenced how a person with Lupus can look perfectly normal from the outside but feeling really crummy on the inside.

Thanks again ... you guys ROCK !!

jfal
10-12-2009, 06:46 AM
Great, now I know what I get to look forward to... :skeptical:

Just kidding. I too have trouble being believed. Not even my Rheumatologist believes that I have Lupus. So...I went to Mexico City for a second opinion, the doctor there saw me and in 30 minutes she said "You don't have Primary APS. It is secondary to Lupus".

Sir, how did you get a "diagnosis"? I started out with wierd neurological symptoms. Had a VDRL come back positive (when my wife's was negative) and the the FTA-ABS was positive too. After finding out theat those 2 tests can have false positives (saved my marriage!) I found out about APS. Now I understand that APS can be secondary to Lupus and I have noticed my sensitivity to UV and reading about everyone else on this fourm, I am convinced that the doctor in Mexico City was correct.

The question is, do I keep seeing the Rheumatologist that doesn't believe it is Lupus and somehow convince him? or drop him and find another?

mountaindreamer
10-12-2009, 08:59 AM
hi sirlupallot, WOW, you have really received the unconditional support of our WHL members....thank goodness for this forum. I also recommend that you print a copy of the "spoon theory"....i keep about 5 copies on hand, and i try to spend one on one time with the people closest to me going through the exercise....it is truly an eye opener. One of my closest confidants was my cousin...when i told her about my diagnosis her response was "i work with a lady who has lupus and she is just fine." I had the opportunity to talk with this co-worker, and she has been in remission for many years, and has only worked with my cousin for a few months....this hurt me to the core, but i had to let it go as my cousin's way of "dealing with the reality." I no longer confide in her about my daily struggles...i just give her the highlights....................As far as worrying about "being a complainer like your dad", have you considred that maybe your dad had an auto immune disease like lupus. I have an aunt who has spent her whole life going from dr to dr trying to find out what was "wrong with her". She is in her 70's and just recently was diagnosed with fibromyalgia. Everyone in the family always thought she was just "trying to get attention." I wonder if maybe your dad was truly struggling with an undiagnosed illness.......................Like other members here, i have learned to give people ownership of their opinions. It hurts, and it means that we separate ourselves from those we love, but (like rob said), it is your body, you own it, and you know something is wrong....you just keep making your health your number 1 priority, and don't let anyone make you question your decisions about your body...................hope you are having a better day today.