The Hardest Part of Not Being Visiblly Ill.

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Torden
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 8/31/2010 6:01 PM (GMT -7)   
Just a moment ago I was told that I was a lying and faking all of my symptoms. Normally this would not be a big deal but this was different because it came from family. The bad thing is that this is not the first time my family has claimed that I was lying and faking. It is especially hard because I have yet to be diagnosed but the symptoms are clearly visible when your in pain, cannot walk without the aid of crutches, and so on. I am not even sure what I am asking but I guess it would be two things...

1.) How do you cope with people (family, co-workers, friends, etc) claiming that you are lying and/or faking?

2.) How can you prove that you are really ill?

Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2567
   Posted 8/31/2010 6:12 PM (GMT -7)   
Odd how some people--even relatives love to deny fibromyalgia! I get a newsletter from a gal with fibro, and she just commented about a good friend not understanding her health issues. I don't know that you can convince some people--whole lotta denial going on, and they'll choose to believe what they want.

It can really be frustrating! My sisters say things like "yeah--I hurt off and on, too" and have no thought for the idea of constant, chronic pain such as we have. I've pretty much given up, but I do remind them when they want to get together for something that I'll be there if I'm able, but can make no promises. I wouldn't wish fibro on anyone, but sometimes I wish people had a clue about it!

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 8/31/2010 6:28 PM (GMT -7)   
Torden, hi and welcome to the forum.  I don't think I've talked to you yet.  Yeah, I know - if I had a dime for every time I've wished someone could feel my pain, I'd be a VERY rich woman!!  devil   Especially when they see how we move, and all the fun stuff we DON'T do - I mean, who would want to have to ask for help with everything if they didn't need it?  Oh, right, because it's so enjoyable to always be left behind and live a less interesting existence.  That must be it.
 
People can drive you crazy.
 
Debbie

GSDgirl
Veteran Member


Date Joined Mar 2010
Total Posts : 1286
   Posted 8/31/2010 6:31 PM (GMT -7)   
That is a hard one. My hubby does not really believe, he says things like "you are getting older" or "yea, I hurt too". When it gets real bad and I am on the couch with the TV down low he ultimately gives in because I am not getting up for nothing.

A lot of times I don't say anything and it kills me that people can't see the pain in my eyes or the squinched up forehead while I try to see straight...............I normally blame a migraine, that people understand....ppfftt..........go figure.

I hope once you get a diagnosis they will see things differently
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR/cleared),  disc problems in neck, depression, anxiety & stress, cervical headaches, porphyria-PCT, IBS
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 

javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/31/2010 7:06 PM (GMT -7)   
I feel you. My hubby has Cronic Kidney Disease stage 1 and really he's fine once in awhile he'll say he has pain, but since this last flair all of a sudden he can't move?I've never seen him like this and I know part of it is because I had been in bed for 2 weeks. I have been lucky with friends and family that they do believe in pain but yet hlaf of them dont believe it's fibro they're always looking for this magic disease I might have...I'm like I'm 99% sure it's fibro so there.

Wish I had a good comeback but I don't

Torden
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 8/31/2010 7:37 PM (GMT -7)   
Thank you all, I was sure I was not the only one that had to deal with thing like this. Tomorrow I make the call to the rhuematologist to see if I can get an appointment. Hopefully it will be soon and not like a month from now.

Angels777
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 8/31/2010 8:25 PM (GMT -7)   
So sorry that your family members are doubting your illness. Maybe you should refer them to http://www.invisibleillness.com and let them read about so many other people who are suffering from illnesses that are not visible to the human eye. If they take the time to go there, maybe they will understand your pain a little bit more.
 
I pray that you can get an appointment with the rheumatologist sooner than later.
 
Loving Hugs,
Shari

Angels777
Regular Member


Date Joined Nov 2009
Total Posts : 23
   Posted 8/31/2010 8:48 PM (GMT -7)   
You're welcome :-)   
You can also go there for yourself too. In addition to this site, It's nice to read what others experience with their invisible illnesses and be able to say to yourself "That's exactly how I feel !"  It helps to know that you aren't as alone as you think you may be.
 
Blessings,
Shari

Torden
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 8/31/2010 8:50 PM (GMT -7)   
Thank you very much Shari, it is nice to meet so many helpful individuals like yourself.

AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 9/1/2010 3:22 AM (GMT -7)   
This is a pretty good article for those who say fibro isn't real:

http://www.sciencedaily.com/releases/2008/11/081103084040.htm

It is about SPECT scans of people's brains who have fibro and the differences that were found between fibromites and healthy people.

It is such a trial to deal with people who think we aren't really ill. Who would fake this???

Hugs - Austen

Torden
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 9/1/2010 12:51 PM (GMT -7)   
I wonder how much longer it will take them until they can use this as an actual test.

GSDgirl
Veteran Member


Date Joined Mar 2010
Total Posts : 1286
   Posted 9/1/2010 3:27 PM (GMT -7)   
I forgot to welcome you to the thread...............Welcome, you found a great place.

When did you get an appt with the rheumy?
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR/cleared),  disc problems in neck, depression, anxiety & stress, cervical headaches, porphyria-PCT, IBS
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 

MrsCavbar
Regular Member


Date Joined Mar 2009
Total Posts : 285
   Posted 9/1/2010 5:36 PM (GMT -7)   
Hi Torden and welcome :)
I am sorry you are having such a hard time with your family, I went through the same thing. Until my son's last birthday this Feb, no one in my family aside from my husband and son (who see me everyday) believed I was sick. To deal with their little comments "Stop whining" "Everyone has pain, stop making such a "thing" over it" and so on I vented to my husband and kept a journal. This last Feb I had driven 3 hrs with my newly 5 y/o son to my grandparents for a family party. During the party my legs gave out, my step father had to pick me up and my mother checked my vitals (she's a nurse), my blood pressure was high and my pulse was low. When I came around they asked what happened and I explained as politely as I could that because of the pain from Fibro and arthritis my legs have a tendency to say "To heck with this" and give out. Since then they've tried to understand better.
I hope your family gets a 'wake up call'. Best of luck and *gentle hugs*
Lola

Any idiot can face a crisis - it's day to day living that wears you out.
Anton Chekhov

FM, costocontritis, degnerative polyarthritis, fibroid tumors, PTSD, 2 heart attacks at 22, PID, anxiety disorder

sobermommy
Regular Member


Date Joined Aug 2010
Total Posts : 80
   Posted 9/1/2010 7:43 PM (GMT -7)   
I am sorry your family is giving you a hard time. I am lucky in that my hubby tries to be really understanding but I don't think he really understands...if that makes any sense. I don't know if I understand it myself just yet. I feel guilty that I can't do the things I need to do..and have to ask for help...and can't get a job to help with income. It is hard when people can't see how you feel. Even my dr...who knows what I am going through...saw me a couple weeks ago and says..."you look like you are doing so much better". Little did he know it hurt to breathe. I don't know what you are supposed to do...groan..moan...and cry all the time?? I do that too much already...lol. Hopefully your family...and others will understand and have more patience with your pain.
Trying to keep my focus...

Fibro, deg/bulg discs in neck, rotator cuff tear, exteme nerve pain in hands after carpal tunnel on both, multiple foot surgeries with pain still, IBS, tension headaches, (Lap band)

Savella, MS contin, Vicoden, claritin, prilosec, flonase, vitamins, calcium

Torden
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 9/2/2010 12:49 PM (GMT -7)   
Sorry for the late post, yesterday was very busy for me.
 
GSDgirl - My appointment is set for September 16 at 10 A.M. I am so happy that they did not ask for a referrel seeing how I do not think I would be able to get one before then. And thank you, I know this is a great place in such a short amount of time.
 
MrsCavbar - I had an incident just like that. My parents came up to visit a couple of weeks ago, I had told them prior to their visit that I was on crutches because I cannot walk without them and it was getting hard to even use them (still using them and still getting harder by the way). They suprised me with a wheelchair, unfortuently I cannot use it to actually get around out side due to it not being manual and only used for transportation, but they are going to be getting a better one soon. :-) But they told my friend that they honestly did not believe what I was saying until they saw it themselves.
 
Sobermommy - I have a life long friend that is my roommate at the dorms, he helps me with alot of things and has told me more then once to ask if I need anything....I still feel awful for not being able to do anything without help. He has supported me a lot and I am glad that he is there for me. As for my family I know my parents believe me now, all they had to do was see me. So I think when I actually go home over break they will all understand....at least I hope so.

sobermommy
Regular Member


Date Joined Aug 2010
Total Posts : 80
   Posted 9/2/2010 6:10 PM (GMT -7)   
So happy to hear that things are working out for you.
Trying to keep my focus...

Fibro, deg/bulg discs in neck, rotator cuff tear, exteme nerve pain in hands after carpal tunnel on both, multiple foot surgeries with pain still, IBS, tension headaches, (Lap band)

Savella, MS contin, Vicoden, claritin, prilosec, flonase, vitamins, calcium

Torden
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 9/2/2010 11:45 PM (GMT -7)   
Thanks, I am too. ^_^
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