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Hi Everybody,

Have you ever heard the term cyberchondria? It's a serious new illness (seriously!) that's causing a lot of problems. Although it seems we have had the ability to convince ourselves we have a disease when we don't for a long time (I convinced myself I had leprosy when I was about 10, turned out it was just dermatitis caused by the homemade lye soap my mother had me use to wash floors), the availability of vast amounts of information available on the Web has caused epidemic proportions of cyberchondria.

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I'd like to point out that this is really a huge double-edged sword for our online community. After all, we deal with scleroderma which is often a very serious disease with a huge gamut of symptoms and severity. Plus, it takes an average of six years to be diagnosed with it. Often, our doctors are kicking around the "S" word in the privacy of their office but not documenting it in our medical records. Meanwhile, we are getting sicker and sicker, feel disbelieved, don't know what to say to family and friends (what disease do we have THIS week?) and we definitely need quality information and support to keep ourselves together physically and emotionally.

How can we tell if we've fallen into the abyss of cyberchondria somewhere along the line? I think one way to tell would be if we feel anxiety but by the same token, refuse to deal with it. Rather than seeking ways to improve our physical and emotional health, we lavish excessive attention on the tiniest new (or old) symptom, lay awake nights worried about it, or spend entire days surfing endlessly on symptoms, and perhaps catching a new symptom or terrible disease with each new website. "Excessive attention" is NOT posting about it online, to see if anyone else has it, to see if it is a scleroderma symptom or to advise others on how we're handling it. Feedback that we get from others can go miles towards reassuring us, helping us put things in perspective, calming our fears over new tests or new symptoms.

So I rather think the anxiety factor, and the unremitting level of anxiety, is the key. It certainly does take some time to adjust to a possible or definite diagnosis of scleroderma. But if we are still feeling very out of whack after having had several weeks to adjust to the idea, then we need to share that with our doctors, and seek treatment, being especially open to complete psychiatric evaluation and counseling, if it is offered. After all, they never had a class in school entitled "How to cope if you might have a serious or terminal illness." So, how should we be expected to be able to know great coping techniques when we've never even been taught them? This is our opportunity for a crash course in managing really major stress!

Also, just like medical students who frequently suffer a bout or two of hypochondriasis during medical school, we need to realize that sudden exposure to an overwhelming amount of medical information can have a negative effect on anyone, even the most well-balanced among us. So when we seek support from venues such as our wonderful Sclero Forums, we can all try to emulate and learn from those who set a good example of balancing life with illness.

A very important message conveyed by Sclero Forums is that none of us are alone; all of us have worked (or are working through) many issues surrounding our illness. We all hope to cope better and to provide comfort to others, which helps make the best of this bad situation. And we can all learn how to be happy, though sick, and how to enrich our lives, despite everything.

From time to time, I'm sure we've all suffered at least a few minutes of cyberchondria. Like, what do you mean my headache might be caused by a fatal brain tumor?! Or, my goodness, my little digital ulcer is going to turn to gangrene and then I'll have to have my finger amputated, and then my hand, maybe my arm! Etc. So, we can all understand the anxiety and panic; and with kindness and understanding, we can also all work together to help avoid the emotional abyss of cyberchondria, as well.

Also, not to be underestimated, many of us have also accurately identified troublesome symptoms via the Internet and have thus been able to seek proper experts, diagnosis, and treatment for many ailments. That is the very positive aspect of being successful in sorting out medical issues via the Internet!

Have you ever suffered a bout of cyberchondria? If so, you can share your (now funny, in retrospect) story here.

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Okay so I might be able to relate...I say might! Well I had a blister thingy come up on my calf (have morphea and diffuse sclero) so I surfed the net for bullous diseases and man oh man was I sorry! I was sure I had one of them, the most gruesome of course, after all it had to be more than coincidence that I had some of the symptoms mentioned, right? Coincidence it was as it turned out to be a bullous form of sclero and not a new disease altogether.


It's easily done my friends, easily done.

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And here is another article:


Are you turning into a cyberchondriac?


The internet can be an excellent source of medical information but that only applies if you know where to look, what to believe and how to interpret it


Ironically, in many cases, health anxiety develops into an illness in its own right for which treatment, usually cognitive behaviour therapy (CBT) and stress management, may be prescribed. People who are genuinely so distressed and worried about unexplained symptoms that they fasten them to an illness need to be taught to change their misconceptions about disease.

I'm having a lot of fun looking up outrageously improbable diseases that could match some of my symptoms! laugh.gif

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That is for sure...I hear ya, Sisters!!!


It is so important for folks to find balance within a reliable health community....

WAIT a minute....We ARE that reliable health community.

For that very reason, I am so very proud to be a part of (this wonderful "wealthful" community) ...it!

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  • 1 month later...

I have to say that I totally agree with both sides of this situation !


I personally did a lot of research on the internet about Scleroderma when I was first diagnosed - and oh my, what a scary amount of information I found !! I'm lucky, I have a reasonably sensible head on my shoulders, and didn't go overboard with it all. But I can only imagine how some people would react to ti all.


I have gently introduced my 'disease' to my friends and family, in a way that I hope has allowed them to realise that it is still only very mild, but could cause me more problems in the future, and that I am doing all I can to help myself.


Having said that, I have also banned some of my older relatives from looking up Scleroderma on the 'net, as I know that they will just panic - and I don't need any more stress (as well meaning as they may be) caused by them thinking my body is about to pack up on me !!


Here's to a sensible, well organise forum - so pleased I found you all :thank-you:

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  • 1 month later...

Hi Lil Dee


I agree with what you say about having to be careful about what you say to relatives. My mother is probably border line dementia so in a way I have lost her as someone to talk to and my daughter who I am very close to, panics and usually cries (and she is nearly thirty) I think she has it in her head that I am about to fall apart completely from this disease or depart from this world altogether, which I have no intention of doing. So, I have found this site a real source of comfort, what it has shown me, is that my own symptoms and progression are slow and manageable and there is no need for me or any other member of my family to panic and having found you all, I don't feel so alone or the need to talk to her about it so much, so bless you all for being out there.


Take care


Sandy B

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  • 5 years later...

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