Reading medical forums

[myWorldofWorry]

I posted earlier about being in a panic state over a rare connective tissue disease, sine scleroderma. This week, I started Googling the disease again after years of avoiding doing so. It's sent me into a terrible tailspin.

What I find even worse than the medical sites are the forums. Why are disease forums such scary places? That's where all the doubts really start to creep back in. There are people talking about how the tests are unreliable --- they never tested positive even though they were sick. There are people talking about how they don't have any of the usual symptoms. One woman posted that she has neuropathy --- this sent me over the edge, since I do too. I never read on any medical sites about neuropathy being associated with scleroderma, and when I read her post, my anxiety sky rocketed. Just one more connection I have to the disease. Their stories remind me that there are no certainties. That diseases present themselves in odd ways, and that all the perfect test results in the world don't necessarily mean squat. Or that uncharacteristic symptoms can still signal trouble. I can't undo what I read. It's just planted a greater seed of uncertainty. And because these are people's real-life stories, they make so much of an impact on me. It's harder to believe doctors when these stories are stuck in your mind.

Anyone else find struggle after reading forums like these? How do you get over what you read?

[Echo Hotel]

I get over it by realizing that a lot of people on tbose forums are also suffering from HA. On the MS forums, a TON of people can't get a diagnosis but still believe they havd it and have atypical symptoms. Forums are not places to go for rational medical information. Even when people are actually diagnosed with something, like scleroderma, they have a tendency to attribute other symptoms to the disease that are not actually connected to it. So what I'm saying is youre reading a bunch of scared, non-medical people discussing their fears and that is NOT informative OR good for you at all!

[vardnas]

It's too late now, I realize, but it's most definitely better for you not to read these in the first place.

I think it's unrealistic to expect that a bout of googling WON'T make anxiety worse. It doesn't matter if you're looking at webmd or these health forums, fact of the matter is:  gooogling will ALWAYS make anxiety worse. Now you're having to deal with the consequences of that action, where it wouldn't be as difficult if you'd refrained in the first place.

These forums, yes, for sure, they can be "scarier" places due to the "real life" experiences that are documented there. However, just because real people are writing about their experiences doesn't mean that what they're portraying is totally accurate. That's not to say they're LYING, but what they're writing is not the COMPLETE story. They're writing what they think is important and pertinent. There could be a whole host of things they're not posting that would shade their stories differently if they did. They're naturally biased, or maybe they didn't understand the doctor fully; their symptoms could be quite different from yours, etc. You just never know. All that to say, you still need to be careful when you read medical forums BECAUSE you just don't know the accuracy of what's being written.

All that being said, you did choose to get on the internet and research this disease with your eyes wide open. I can't imagine you didn't realize it'd make you anxious. Googling is proven negative reinforcement and there's a reason why you're engaging in it now when maybe you didn't in the past. It's up to you to figure out why that is—maybe there's some unaddressed stress going on, who knows—and work through it. Maybe you've mentioned it in the past, but are you doing anything to address your anxiety at the moment?

[oceanlover]

Ugh! I totally feel you on this. I try to stay away from them. I do know that a lot of what people post online and much of the literature we find on diseases is often the rare, worst case scenarios. Unfortunately I don't know how to forget it....I guess eventually it just goes to the back of your mind. Also, keep in mind that many people, when diagnosed with something serious, tend to lash out toward the medical community...ranting about how doctors know nothing and they were tested wrong, so on and so on. Make a promise to yourself to stay away from those forums from now on. Now, if only we could erase all the terrifying things we have read in forums and googled. Unfortunately, I have googled enough to last me a lifetime. Now we just cope one day at a time. :)

[Allochka]

I fully agree that forums on medical issues are full of HA people and unreliable info! And there will definitely be members who will proclaim that docs and tests can't be trusted. This is the worst thing for a hypochondriac to hear.   
At the same time, crazy as it would sound, one MS forum provided me lots of reassurance last year. Because it showed me that with MS life goes on. People were chatting about much more positive things than those things we discuss here. Nobody thought about cancers, inevitable death and so on. But it was an MS forum, disease which is not fatal and to some extent managable. I would never even try to read cancer or ALS forums, no way! And as a rule - we should keep away from all such forums. We'll find out about new symptoms there, our minds will readily re-create these symptoms to us, and we'll just end up in firm belief that we are doomed.

[sixpack]

I fully agree that forums on medical issues are full of HA people and unreliable info! And there will definitely be members who will proclaim that docs and tests can't be trusted. This is the worst thing for a hypochondriac to hear.   
At the same time, crazy as it would sound, one MS forum provided me lots of reassurance last year. Because it showed me that with MS life goes on. People were chatting about much more positive things than those things we discuss here. Nobody thought about cancers, inevitable death and so on. But it was an MS forum, disease which is not fatal and to some extent managable. I would never even try to read cancer or ALS forums, no way! And as a rule - we should keep away from all such forums. We'll find out about new symptoms there, our minds will readily re-create these symptoms to us, and we'll just end up in firm belief that we are doomed.

I belonged, I guess I still do but don't go on anymore, to a seizure forum.  I didn't join to lurk or find out if I was having them    I joined because my eldest has a severe seizure disorder.  When you or a loved one has an illness or what have you, forums can be helpful.    BUT really only for those with the disease not those fearing it.  There were times peeps who joined because of thinking they had them or were HA peeps. ....  not a good plan in my book.

[ceh1354]

I agree. No good has ever come for me in reading those forums. I hope you didn't join any.

Can't really tell you how to forget what you read, there really is no way. Just make sure to stop and like someone else said, keep thinking how rare those instances are of odd symptoms, no symptoms, etc.  The odds on those are astronomical and no one ever mentions that when telling their story.

Feel better.

[trainwreck]

I agree. No good has ever come for me in reading those forums. I hope you didn't join any.

Can't really tell you how to forget what you read, there really is no way. Just make sure to stop and like someone else said, keep thinking how rare those instances are of odd symptoms, no symptoms, etc.  The odds on those are astronomical and no one ever mentions that when telling their story.

Feel better.

I belonged to one because my brother actually had the disease. The people with the diease were very gracious to me, as I was there for advice on how to deal with some of the practical issues of actually having the disease.
The vast majority of the people on that forum were, however "undiagnosed quasi-medical experts" who THOUGHT they had the disease and didnt.  So don't put much stock on anything you read on a forum like that. 
Better yet, as said before my post, stay away completely.  You are just going to get bad information and anxiety.

[sixpack]

I agree. No good has ever come for me in reading those forums. I hope you didn't join any.

Can't really tell you how to forget what you read, there really is no way. Just make sure to stop and like someone else said, keep thinking how rare those instances are of odd symptoms, no symptoms, etc.  The odds on those are astronomical and no one ever mentions that when telling their story.

Feel better.

I belonged to one because my brother actually had the disease. The people with the diease were very gracious to me, as I was there for advice on how to deal with some of the practical issues of actually having the disease.
The vast majority of the people on that forum were, however "undiagnosed quasi-medical experts" who THOUGHT they had the disease and didnt.  So don't put much stock on anything you read on a forum like that. 
Better yet, as said before my post, stay away completely.  You are just going to get bad information and anxiety.

same reason I joined, actually two, forums.   One was spectacular.  I made a fair amount of  friends.  One member was a med doctor in school for neurology.  he had a seizure disorder.

but yeah some peeps in their acted like quasi med pros.......

[mustang65]

Hi WorldofWorry,

I read your other post and just had to respond, because I practically could have written it myself!  This past fall, I became very ill.  My list of symptoms was a mile long - multiple neurological symptoms, multiple GI issues, respiratory problems, musculo/skeletal problems, and mental issues.  When the doctors couldn't figure out what was wrong after a few weeks of testing, I got on Dr. Google and came to the conclusion that I had scleroderma.  (This is when my health anxiety started).  I, too, have Raynaud's.  I also have always tested low on pulmonary function tests (and have been diagnosed off and on with asthma because of it).  At the time, I had all of the symptoms of scleroderma except the skin symptoms.  I had my ANA tested, and it came back negative, which put my mind at ease about that particular disease.  After a few more weeks of testing, it was determined that I was suffering from severe anxiety and a B12 deficiency.  What I discovered during that time though, was that your constellation of symptoms (which were very similar to mine), could be attributed to MANY, MANY different diseases/conditions, most of which are very easily treated (like a B12 deficiency).

Anyway, I started taking B12 supplements, which helped tremendously, but I have still been having trouble with anxiety.  Personally, I am not big on medication.  I try to take as little medication as possible, and always prefer natural treatments.  BUT...my anxiety got so bad, that two weeks ago, I broke down and filled a prescription for Lexapro.  A mere two weeks later, I feel like a different person.  My anxiety is SO much better, and my physical symptoms are about 80-90% gone.  So, even though I was reluctant to try it, it has been absolutely worth it for me.

Finally, this forum has been very helpful for me.  I read something on this forum not too long ago about reading medical forums.  It said that when someone is diagnosed with a disease, every single ache and pain becomes attributed to that disease, even though there are many aches and pains that are totally normal and just part of being human.  This was something that I had never thought of, but I believe it is absolutely true.  So, just because one person with scleroderma said that they have neuropathy, it doesn't mean that the two are related.  Ever since this fall, my anxiety tends to manifest neurologically, but I am no longer worried about having scleroderma.

You MUST stop googling!!  I know it's hard, but the longer you go without googling the better your mental state will be.   

[myWorldofWorry]

Thanks, everyone! Mustang65, how interesting to hear that you went through a similar fear. I wish I would have overcome mine after the negative ANA like you did. I'm also so glad to hear the Lexapro is helping. I started taking Prozac this summer and felt like it was starting to help, but then I got pregnant and had to go off it. That's also right around the time my psychologist left her practice. I have been trying to keep the anxiety in check during this pregnancy, but obviously I relapsed big time this week. I appreciate your words of support. I am so disappointed in myself for everything I read this week. I can't undo it, and it's haunting me now. It's just been so hard trying to handle the anxiety during this pregnancy. I pray for better times ahead.