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Ever get that feeling that people think you're a hypochondriac??

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Posted 10/8/2011 2:00 AM (GMT 0)
I can sort of understand it because if I was a normal, I would also think "How can so many things be wrong with ONE person!?" I've had a lot of things wrong with me for a very long time but it seems that now that I've added on the Fibro diagnosis, people have been giving me funny looks - as if I'm making up this stuff! As if! Tell that to my burning, aching, twitching and sensitive muscles or tell that to my mind that forgets things 2 seconds later. How in the world do you deal with people that give you that ole stink eye?? Just turn the other cheek? Try to explain??

As you can see in my signature, I truly do have a lot of things wrong with me but even though I've had it for years, I have been recently diagnosed with Fibro and for some people, it just seems to be too much. Heck, it's even too much for ME!
Posted 10/8/2011 2:43 AM (GMT 0)
The biggest problem a lot of people have is that I don't look sick. Another one is that, since the pain is not always in the same spot, it seems like I am dramatizing "little aches and pains". Anyone of us in here knows first hand what the pain is about. I am grateful that my husband and son understand most of the time. At least if something happens that I end up getting bumped, they apologize right away. It's disheartening, how so many of the others in my life treat me as if I'm a fake. Glad I have all of you in this forum :-)
Posted 10/8/2011 3:03 AM (GMT 0)
Lol, I don't look sick either....unless I don't wear make up! :) So when people see me and than learn what I have wrong with me, it's like they don't believe me.

Just today, I was talking my husband. I received a newsletter from a local hospital and it in, they were talking about Fibro. I read the newsletter to my husband and reminded him that the Rheumy diagnosed me with Fibro not too long ago (he has a forgetful memory - or selective memory???). He gave me a curious look after I had to remind him that the Rheumy found 16 out of 18(?) of my tender points, as well as the other problems associated with Fibro.

But, what really hurt is that last year, I have been dealing with lower back pain for a long time and before I found out what was wrong (Sacroiilitis and Scoliosis) I mentioned it to my hubby of what it could possibly be. He called me a Hypochondriac. Needless to say, he made me cry because for years I KNEW something was not right and after dealing with doctor after doctor who told me they couldn't find anything - eventually I did find a doctor that DID. But the years in between made me doubt my sanity.

So when someone doubts me after I tell them about the Fibro diagnosis, I sort of go into that protective and submissive mode and just get quiet. I HATE it because normally I am very vocal about certain things but after dealing with years of doubt, I sort of shy away from having to explain myself. I don't care to explain myself to people I barely know, but when it comes to people I love and care about - I want them to believe me....is that abnormal???
Posted 10/8/2011 4:01 AM (GMT 0)
For years, I felt I could be an episode on Mystery Diagnosis. I have plenty of diagnoses and it took a long time to get them...still have strange stuff going on and a group of specialists. This past year, I've had plenty of tests and some procedures done....many of you have supported me through all of these.

I've said this many times before....we know our bodies better than anyone and we know when something isn't right. If someone thinks I'm a hypo-chondriac, I don't care as long as it isn't one of my doctors. Of course I would hope that my family and friends would believe me.

My family and friends have been very supportive of me, and I know I'm very
lucky.

Years ago, I had a doctor laugh at me when I told him I was having gallbladder trouble, He said I was only 25 and was not fat. He told me I had an ulcer. Long story short...I had to have an emergency surgey to have my gallbladder removed. Since then, I have been an advocate of being proactive in your own healthcare. Do not let doctors intimidate you.

It is not abnormal to want doctors or loved ones to believe you when you know something is not right.

Hugs, Robin
Posted 10/8/2011 3:07 PM (GMT 0)
I've run across people who don't believe in fibro including doctors. What helps is having at least one or a few people in your life who understand--who truly believe you. That way when you run across these incidents you have someone to talk to about it--someone who knows what you're going through. I'm lucky to have that at last with the new man in my life.
Posted 10/8/2011 4:09 PM (GMT 0)
Sherry, we all go through this.  This is why I usually don't tell anyone that I have fibro.  For too many years, this has been considered a "garbage can" diagnosis.  Doctors didn't believe in it and, when they couldn't find anything wrong, they gave you this diagnosis or said it was all in your head. 

 

Things are finally changing.  Fibro is recognized by the American Medical Association, the American College of Rheumatology, the National Institute of Health, and the World Health Organization to name a few.  Yes, it's a true illness but the public is just starting to catch on now.

 

One of my friends and I have been friends for over 8 years.  She knows I have fibro but never understood it, even though I've tried to explain it to her a million times.  Well, she is reading a book and the character has fibro and likens this illness to lupus.  Well, my friend finally got it!  She asked me about it.  I told her we get many of the same pains as lupus but lupus is more serious.  She acted soooo surprised!   shakehead  

 

It is hurtful when your spouse and close family members don't understand.  You can try printing out things about fibro that are on Fibro 101.  Good ones would be A Thorough Explanation of Fibromyalgia and also Doctors Respond to New York Times Article.  If they read these, it might help.  If they still are in denial about your illness, there really isn't much you can do about it but ignore their ignorant statements.  It is ignorance that makes people say some of these things.  They don't try to understand or put themselves in your place.  It's really a shame.

 

I have scoliosis, too, and I posted about how to get in and out of bed and the car properly.  This has helped me with lower back pain sooo much.  If you missed it, scan down and you will see a thread called How To Get Out Of Bed Properly.  Click on that you and will see my post.

 

I have had illness all of my life, starting as a toddler.  I have a pretty good list going, too, but I don't dwell on it.  It's my life.  I have to live it to the best of my ability and I have had a good life in spite of all I have been through.  Having illnesses makes us more compassionate, I believe.  Life is not a breeze for us but we do learn a lot about life and people because of our health.  I'm just so thankful that I can get around and do the things I really want to do.  A positive attitude helps immensely with any illnesses so I have leaned on that throughout my life and the positive attitude has served me well.  There is a wonderful post in Fibro 101 about positive attitudes, too. 

 

So, take one day at a time, work around your problems to do the things you want to do, let ugly comments roll off your back, and put a smile on your face and enjoy your life.  It's your life so don't let others snatch joy away from you with their lack of understanding.  We all understand exactly what you are going through.  You definitely are not alone.

 

Sherrine

Posted 10/8/2011 5:23 PM (GMT 0)
This thread just made me think of something. My girlfriend and I both have fibromyalgia. We took a walk together in the woods yesterday. You know, the word 'fibromyalgia' did not come up once in any of our conversations. It just dawned on me. But the scenery was breathtaking, the weather was gorgeous. The colors were awesome. I just had to share that. I took photos, wish I could share some of them too, but I don't even know how.

I don't tell many people I have fibromyalgia either. But I have my pain pretty much under control now and it doesn't effect me like it use to. I still have my moments though. Getting out of chairs and off of the toilet is getting hard, but I think that is arthritis moreso than fibro. Though my quadrocepts hurt when I get up. So it is a muscle pain. Sometimes that stops me in my tracks. But other than that, most of the pain fades into the background as I try to stay busy and still feel like I am accomplishing things, even though I don't accomplish as much as I use to. But I feel as long as I am busy, I am getting somewhere.

Try not to worry about what other people think. This is your journey, not theirs. Try not to be hard on yourself. Know that you are doing the best that you can. And if some days you can't do anything, well, so be it. Don't beat yourself up over it. Most of all, take life one day at a time. That is all that we can do. Life is short, so live it well. Do the best that you are able to and forget about the rest. It isn't going anywhere, unfortunately...

I hope that you are having a good and painfree day. All of you!!!

I am off to make an apple pie.

Hugs, Karen
Posted 10/8/2011 6:34 PM (GMT 0)
It would of been nice if my Dr. over the years told me that 3/4 of my diagnosis are fibro related. It took finding this site and put two and two together. Now I am not so worried that I have over 10 diagnosis. I have had other DR's not know me and say your so young to be in this shape. Now maybe I won't scare them as much. It's fibro symptoms, I can say.
Posted 10/8/2011 7:18 PM (GMT 0)
I don't think there is anything abnormal about wanting close family to understand us, especially in the moment when we are in pain. Unfortunately a lot of us do not get supported by family. Even though I get support at home, there are still times when my husband does not understand, and he gets aggravated with me and my pain. It does hurt my feelings, and I end up feeling uncomfortable in my own home. There isn't much for me to do about it though, except try not to let it get to me, otherwise the pain increases. If I cry, the face and head pain starts up as well, which makes me crazy if that part of my was pain free. All of you in here are a great help.
Posted 10/8/2011 9:04 PM (GMT 0)
I feel so bad for those whos family doesn't support them. My husband is very supportive, in fact he thought I had chronic fatigue before I realized what was going on. But I notice I am worse under stress. So we all need to try to be stress free. I hope that you all feel better soon.

Wishing you all a painfree weekend.

Hugs, Karen
Posted 10/8/2011 9:31 PM (GMT 0)
I think my boyfriend would become frustrated with my health conditions and my limitations if he didn't see me trying to do all I could to deal with them. He often tells me he admires how well I take care of myself. I think we wouldn't be together if I didn't and vice a versa.
Posted 10/8/2011 10:02 PM (GMT 0)
A lot seems to depend on the person. I've had people who already knew what fibro was who were instantly understanding. Others are the people who think it is a made up diagnosis and I need to pursue it further. On the other end of the spectrum are those who think it doesn't exist. I don't get a lot of people in my life who think I'm faking it because in less than a year I went from being relatively normal to being unable to walk normally or do many things. But there are a number of people who when told my diagnosis have that characteristic shifting of the eyes that tells me this person doesn't believe in fibro.

That said, it certainly hurt last month when my sister visited and said "Mike [my husband] says you think you have fibromyalgia." Think?? I told her that I'd been given a diagnosis by a doctor and it wasn't my own opinion. She was at least willing to take some stuff I'd printed off of the internet to read. But it made me wonder what else my husband was telling people?

He was told by my SIL who also has fibro that exercise is the best thing for the disease. But he understands that to mean I should be doing an hour of aerobic, another hour of weight lifting and an hour of yoga every day, with maybe a 10k thrown in on the weekends. No amount of explaining that 10 mins on the treadmill and another 5 mins on the recumbent stationary bike with stretches a couple times a day is all I can handle right now gets through to him. My SIL was diagnosed 15 years ago, she is a bit farther along on this journey than I am. She certainly doesn't do that much! But he just won't see that.
Posted 10/9/2011 4:29 AM (GMT 0)
I go by the motto that those who matter will believe me & those who don't don't matter. Or, at least, they are just lacking in facts.
Posted 10/9/2011 12:46 PM (GMT 0)
Thank you all for your kind words and responses.

My husband is very understanding, don't get me wrong. He is always there for me and he knows that I am not making these thing up - heck all my ER trips have told him that! But I think it's the fact that yet ANOTHER thing (Fibro) has popped up that it makes it hard for him to keep up. I know he gets frustrated that he can't do more to help me. He says that I scare him. It's just that after feeling like crap and not knowing the reasons on WHY my back hurt all the time and no doctor could tell me that I was SERIOUSLY doubting myself - than he threw in the hypochondriac comment. He apologized left, right and center for making me cry.

I don't let my conditions define who I am. I am me; a person who just happens to have health issues. I normally don't let things stop me from going out and enjoying what there is to offer. And like I said, I don't care if people I barely know understands me or not - really I could care less. It's the people closest to me that I want them to understand. But I feel, like with my husband, that adding on another things is just too much for them to understand fully. I guess I can always work on it, but truthfully I am running out of steam and I am not sure I want to anymore.
Posted 10/9/2011 4:44 PM (GMT 0)
Sure you want to work at it, Sherry!  Just take one day at a time.  You can handle one day.  We all have good days and bad days so if I'm having a bad day, I hope for a good day tomorrow...or even later in the afternoon!  Fibro is fickle. 

 

I sometimes envy friends who really don't have health problems to speak of.  I wonder what it's like to wake up pain-free.  I honestly can't remember!  But God gave me a good life and I will make the most of it.  I've got lots of good memories to prove it, too.   :-)  

Sherrine

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