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a lack of understanding

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Old 02-21-2003, 08:03 AM   #1
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Join Date: Dec 2002
Location: new york
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Criktor HB User
Post a lack of understanding

Ever since before being diagnosed with lupus 3 years ago, I have been battling with the fatigue and depression along with muscle aches, arthritis, and raynauds. But the last 3 seem easy to "prove". Or at least more easily understood. It seems half the people that I talk to about the depression think that I should go on medication or learn to deal with it myself, primerally through meditation and self-healing, or "just getting over it".
Nobody really thinks I have fatigue. The general consensus is that I'm just really lazy. In the time since diagnosis, I've worked and gone to school. But I've learned that it drains me too much to do both. Depression sweeps up over me, and my muscle aches and arthritis get worse. However, I'm living in NYC, albeit with my family, and it simply costs to much to only be going to school, with only one steady babysitting job a week.
I have to face the fact that it may be better for me if I go to school part-time, and work part-time. This feeling of mine is most generally taken as me being lazy, and unable to stand up to the pressure of being in school. Everyone else can do it. I've dropped out of college before for these same "reasons", clearly I must just be weak and lazy. Yesterday my best friend, a girl who had been with me when I was diagnosed, and who I literally grew up with, accused me of just that. That my insistance that I need to be able to sleep until 10:00am is rediculous in someone who needs to work. I should "make up my mind" to change it, and just get up earlier. I couldn't, and still can't understand how she could be so hurtful. For the last 3 years, she has been with me, for the most part, when I've gone through hard times, and it turns out that she actually doesn't really believe the things I say.
I'm sorry for venting like this. I just was soooo hurt by it. Has anyone else experienced this? people simply not believing, or misunderstanding symptomes? Or do I sound like I just "need to get over it"?
thank you

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Old 02-22-2003, 11:08 PM   #2
Denise F
Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User

You need to find a good book on Lupus to give her to
read or if you think she won't read a whole book try
to find symptoms on the internet or personal stories
from other people with lupus for her to read. A healthy
person has no idea what the fatigue of Lupus feels
like other than to compare it to a real bad case of the
flu. When it hits there is no way to fight it and you
should not, it's the only way your body has of trying
to tell you that it needs to rest. Even when you are
feeling better you need to take rest breaks. It's
sad when others don't understand. I guess it's
because it can't be seen and we look normal that
others doubt us. Also if we complain too much it
can cause others to tire of it. I rarely ever say
when I'm feeling bad just for that reason. I have
a cousin with Lupus too and we call each other when it
gets too much and we have to vent!


Old 02-23-2003, 01:31 PM   #3
Join Date: Oct 2002
Location: va,usa
Posts: 57
shasha HB User

hi, i just wanted to say im sorry people are not more understanding to what your illness. i am newly diagnosed with lupus and other fun stuff and when the people who know me (not my family) ask me how im doing,i say im o.k. because unless they have a chronic illness themselves they will never know and it is im finding impossible to make them understand that everyday its something, besides unless there truly your friend they are not going to want to here it.
i think the best thing to do is to meet people in support groups, because you know they know.
good luck and god bless


Old 02-24-2003, 08:35 PM   #4
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Join Date: Aug 2002
Location: Staten Island, NY USA
Posts: 2,223
purple2067 HB Userpurple2067 HB Userpurple2067 HB User

I don't have lupus, but I always check this board because I have sjogren's. I know how you feel about your best friend. About a year ago I had a terrible eye ulcer from the dryness caused by the Sjogren's. For a month I was in so much pain that I wanted to die. I only ever left the house to go to the dr. I think I heard from my best friend about 3, maybe 4 times during that month. Maybe I saw her once. This is a girl who normally cannot go more than 15 minutes without calling me for some reason or another! I think it was just very difficult for her to deal with the fact that I was sick. It was hard for her because I wasn't around to hang out with, to cry to, etc... But I think it was even harder because there was nothing she could physically do to help me get better. I heard from all of my other friends practically every day. Some even stopped by with gifts and offered to take me to the dr (I had to go every single day, and my family couldn't always take off to drive me). Everyone else called, but she didn't. I couldn't exactly concentrate on our friendship at a time when I thought I might lose the sight in one eye. But once I got better and realized I was going to be OK, the anxiety from that lifted and I started thinking about my friendship. I wrote a letter to her telling her how mad I was at her, and how selfish I thought she was being. I probably also said some other pretty nasty things. I was all ready to give it to her and tell her to just give me back all the stuff she had borrowed from me and that would be it for the friendship. But then after I calmed down, I don't really remember who called who but I decided to explain to her just how sick I was and how upset I was that she didn't call me or want to hear about my illness. She felt very bad and she apologized. I decided not to give her my letter. I think I threw it out. We're still best friends, and now she is actually very concerned about my health. She asks me how I am feeling, wants me to call her and let her know how my drs appointments go, and has even accompanied me to some drs appointments that I couldn't drive to on my own. I still get upset once in a while that she wasn't there for me when I needed her most, but I think she has done a lot of growing up since then. Basically I told her that a friendship is give and take, not take and take, and that if she wasn't going to start giving, then I was going to STOP giving. Things are much better now. We still fight (as in any relationship), but I am glad I have her.

I think that your friend also has a lot of growing up to do. If you've been best friends with her for 3 years, you must have some reason or another for liking her. I think that getting a book about Lupus and asking her to read it is a very good idea. If she won't read it, well then maybe she's not worth having as a friend. But if she is willing to read it and try to understand the illness, then it's worth a shot. I would have been very hurt too. I probably would have started crying! Some people think that anybody who is sick is really just being lazy. But that's just plain ignorance. I'd like to see some of the people who think that walk around with Lupus for a day, or any other chronic illness and see how they feel. It is totally understandable and expected that you need more sleep than others. She may also be telling herself that you are just being lazy, because she can't cope with the fact that you are sick. I think you need to talk to her about this and tell her how you feel and that you really need her support and understanding. Without being mean, try to ask her how she would like it if she was going through a very difficult time and you made light of it.

I sincerely hope that everything works out for you.

Good luck,

[This message has been edited by purple2067 (edited 02-24-2003).]

[This message has been edited by purple2067 (edited 02-24-2003).]

Old 02-25-2003, 09:47 AM   #5
Join Date: Oct 2002
Posts: 9
Hagg HB User

You guys made me cry! I SO know what you are going through - I am in your shoes now! My friends and inlaws think I am being overly dramatic about my Lupus and crippling fatigue, it's come to the point where I avoid them when I can and lie and tell them I'm well when I cannot. My family, including my husband, ran out of patience and sympathy 18 months ago.

I fight against feeling embarrassed and ashamed. It's not our fault. I wish that Lupus was a more "famous"
disease. No one tells cancer patients to get off their *** because their pain and exhaustion is a product of their laziness!

I haven't been able to return to work since my son was born, and lupus flared up, two years ago. I don't have organ involvement, I'm just achy and desperately tired. How sick do we have to be to qualify for disability? I can care for my son, but sometimes days go by when we don't leave the house because of my illness. It's a hard place for us to be.

Old 02-27-2003, 06:51 PM   #6
Senior Veteran
Join Date: Aug 2002
Location: Staten Island, NY USA
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purple2067 HB Userpurple2067 HB Userpurple2067 HB User

I don't have Lupus (thank God) but I do know what it feels like to really have a legitimate illness and have everybody think that it is in your head. When I was a kid I had a lot of very severe allergies (not that you can compare that to Lupus in any way though!) and my mom was the only one who ever believed me, because my symptoms were not just your normal allergy symptoms. None of my family members ever wanted to hear it. Even my dad tried to pretend like this wasn't going on. I even went for counselling to cope with all the problems I was having, and the fact that nobody in my family believed me. I was sick with allergies from the time I was born (allergic to my formula, etc...) how could I be making something like that up? Even now, most of my family members (except my parents, grandmother, brother and uncle) all still feel like if I would just stop dwelling on all of my illnesses, everything would just go away. I certainly don't dwell on it, but it does consume a lot of my time and energy! I've been lucky that my mom has been there and has always believed me and taken me to every dr possible. But I just hate always having to explain myself to others.

Old 02-27-2003, 08:21 PM   #7
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Join Date: Feb 2003
Location: Wichita, Ks. USA
Posts: 33
quackers HB User

I hope you all like my User ID...I picked it because all the specialist I had to go thru to be told I have +ANA Lupus, I don't have Lupus, I have Lupus, I don't have Lupus. THEY ALL MADE ME QUACKED!!! And then today I was told by my Rheumatologist (for Fibro) that I MAY or MAY NOT have lupus because my titre's are so low. Personally, I don't think I have Lupus and no, I'm not in denial. There are such things as false positives and since every test came back negative for ANYTHING. I just don't agree with the dr. I should be one healthy person according to all the test they done. Yet it's all I can do to drag myself out of bed everyday, put on a smile and take care of my elderly patients. But I do it. I don't have any choice. I have bills to pay and no ones going to pay them for me. I have suffered with pain in every joint of my body every day of my life for as far back as I can remember. As a 4th or 5th grader, I even remember being put in the hospital and lots of different xrays and tests being done (low back pain). That was the first time I was told (or remember hearing) that I had growing pains and was probably just looking for attention since I was the youngest out of 6 kids (what the heck does that have to do with back pain?). The kids at school would tease me unmercifully because I couldn't run, walk, sit, play w/o being in pain. But I would do it just to show them I could and that I wasn't a sissy...and I would be crying the whole time. They called me Hypochondriac, lazy, sissy, weak...ect (and that wasn't just the students...the teachers did too). After I turned 20 (I'm 40 now) got worse. I've been to dr after dr after dr just to be given drugs and sent on my way. When the drugs didn't work, back I'd go, only to be given different drugs and therapy. When THAT didn't work...back I'd go. Then they'd try anti-depressants and whatever other therapies they could come up with (sometimes the anti-depressants did work) and every single time I would leave the dr's, I would leave with the feeling that they thought it was all in my head and they were just giving me drugs to placate me (like I want to spend $50+ per prescription on meds!). I even over heard one dr telling a nurse to give me a script of Lortab .5 (like that low dose is gonna help anything?) with 2 refills and not to accept any return visits from me on this issue!!! I picked up my purse, walked to the nurses station and told the dr that I wanted a copy of my chart TODAY and that I would be reporting him to the board of healing arts. I did report him and got a letter from them stating that they would check into it but I never heard back from them after than and calls were never returned. He is however still practicing and is in fact in my new drs building!

I know exactly where you are coming from! My family (not that i remember) ever treated me different because of my aches and pains. It's only been within the past 5 yrs that my health has gotten out of control and the past 4 months have been pure heck! I finally decided that all my drs were the crazy ones and were only trying to make me think I was. I quit all my drs and meds (13 meds in all!) and I have never felt better in my life! My short term memory probs have almost disappeared, my aching joints pain level is at an acceptable tolerance, my feet/back/shoulders havn't hurt to bad for 3 wks and has been 5 wks since I stopped most meds. If you are on alot of medications, you might talk to your dr to see if maybe some of them can be DC'd or doses lowered or maybe theres 1 pill that can take care of 2 or 3 problems instead of 1 pill for each prob.

The one true friend that I had broke my heart 5 yrs ago (we speak now due to her children (my god children) but that's about it) when I found out she was a drug addict and had been hiding it from me HER WHOLE LIFE!!!!!! I knew that she dabbled in drugs (I did to at that point), but I stopped doing drugs and thought she did too. She just got better at hiding it is all. She is the only person that I had that believed in my problems and that I really had something wrong with me but that the drs were too unconcerned to figure out what it was. I worked because I had to. I didn't have a choice. I went to school because I knew w/o a diploma, my life would be harder than it already was. I understand where your friends and family are coming from when they say you're just being lazy, selfish, to 'buckle up' and be strong, to 'work thru it', yadda, yadda, yadda. All of us have been there and heard it. But when you don't HAVE anyone else to support you, you have no children so you can't collect welfare so that you can stay home and take it easy, when you can't get a diagnoses of anything wrong so you can draw disability, you don't have parents/family to live with that can afford to financially/medically support have no other choice BUT to go to school and work. I know myself well enough that if I took a desk job so that I wouldn't be taxing myself too much...that job wouldn't last a month. I'm one of those ppl that just can't keep a job unless I'm interested in it (been there, done that). I've had my present job for almost 13 yrs. I lucked out in that I finally decided on the medical profession to work in, because everyone knows what my medical probs are and that they don't always show themselves on the outside. I've left most of my friends behind because like you said...none of them thought anything was wrong with me and the few friends I did have never wanted anything to do with me when I was down and not feeling well and couldn't participate in what they wanted to do. I have a few co-workers I hang with and they are all like me. They've got their aches and pains and don't feel like doing anything either, so we get along fine!!! I've learned not to discuss my health probs with outsiders (in real life) cuz they just don't understand nor do they want to. They think you should be just able to pop a pill and be on your as a fiddle. I don't even discuss it with my husband. He doesn't know half of my health probs or that I've stopped my meds. He's a blabber mouth and if he knows everything that's going on...he'll tell the whole world (his family, friends, co-workers). Welll...I know it's not right and that I shouldn't keep important health info from him but when you've spent your whole life defending your health problems to ppl that don't have the slightest clue to what's going on with you...I'm just not ready for his family to start looking at me like everyone else always did. I don't think I could take it. I use to tell him everything, until I found out he was telling his mom, kids, uncles, brothers, about my pap smears, mammograms and physicals...I ask him to stop telling them, if I wanted them to know I would tell them myself...and he didn't stop so I just don't tell him anything.

Most ppl don't understand. They don't like being around sick ppl because it makes them uneasy (especially if they don't seem like their sick) and it makes them realize how quickly life can be taken away from us.

I guess about the best advice I would have to give is to just 'keep on keeping on'. Understand that those that supposedly love you DON'T understand and probably will never have a clue as to what you're going thru. Just know in your heart that you're not lazy, selfish, depressed, ect and try not to judge them too harshly. If at all possible, don't discuss your health issues with those that are this way towards you and ask your mom to keep it 'mum' too. If they don't know what's going on with you, then they can't judge you, but chances are...they'll just find something else to judge you about. Keep your chin up and try not to let them get you down too bad. Take care and be safe.

Old 04-11-2003, 12:53 PM   #8
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Join Date: Dec 2002
Location: new york
Posts: 17
Criktor HB User

thank you thank you thank you for all of your replies. I feel so much better knowing that others have gone through this as well. On a Post Script note, I later spoke to the friend, with whom I had grown up with. We didn't say much, she's not one to talk comfertably with herr feelings for hours, but we did convey to each other some things. I told her how hurt I had been, and she said that she was extremely sorry and had been caught up in her own life's drama at the time to really recognize mine. Our friendship has returned as ever, heck, we've known each other since I was born and she was 6 weeks old. But, I don't go into my complaints with her anymore. Sometimes I'll mention a little if I'm feeling fatigued or depressed, but I certainly don;t go into it. I've discovered that my boyfriend, mother, or sisters are better to talk to.
Again, thank you for your replies, they really mean a lot to me,

Old 08-07-2005, 12:01 PM   #9
Join Date: Aug 2005
Location: Asbury Park, NJ
Posts: 1
jillp1015 HB User
Re: a lack of understanding

Wow. I cried with identification when I read all these postings. I feel sooooo alone right now! On top of being diagnosed w/ Lupus this year, I am also a recovering addict. So, pain medication hasn't been an option. The depression I can absolutely feel myself going into seems like a black hole that I can't find a way out of - I feel helpless. I don't get enough rest, even though I'm not working right now. It's just that when I try to sleep, I can for about an hour and then wake up with some kind of pain or discomfort. I haven't gotten a good sleep in about 6 months and it's really taking it's toll on me. I have a 3 1/2 year old baby girl who is staying with my parents right now. She comes back to me next month and I can even imagine HOW I'm gonna be able to give her the care she needs - I can't even imagine pushing a swing on some days let alone running around with her. It's not for lack of wanting to - if "desire" were all I needed, I'd be great! I, too, get that "you're just lazy" feeling or look from other people. If I hear one more time "you just have to Do it!" I'm gonna scream! I need support and people who really understand. Is there anyone out there who is also in recovery? I'm having a real hard time trying to decide whether or not I should actually take some pain meds. I can't imagine that "THIS" is my life from now on. I used to love to go out - my mom actually used to call me the gypsy of the family 'cuz I was always runnin somewhere. Now, just walking down the stairs to get the mail is a task in itself. I'd appreciate some support. Thanks.

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