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Dear Prickles, My doctor told me that looking up my symptoms online is a bad idea, but he didn’t explain why. I had Lyme disease for several years before diagnosis and my doctor didn’t think to test me for it until I read about it online and asked him if Lyme disease could be causing my symptoms. Do you have any idea why he feels that way? Thanks, Jane, 28
Dear Jane, Well there are a number of reasons why some doctors are wary of patients using the internet for information about their symptoms or diagnosis. It can be very dangerous for someone who suffers from hypochondria to go online and look up symptoms and disease, as they can easily start to obsess over symptoms and become convinced that they have a condition that is going to progress and cause them awful suffering. This can lead to the patient taking excessive medication or supplements so that they will not feel the pain or other symptoms, which can be very damaging to the body. Of course there is also the risk that someone afraid that they might suffer terribly as their condition develops may try to commit suicide in order to avoid this traumatic experience. As there's no easy way to check if a patient is suffering from hypochondria, some doctors probably feel that it's best to err on the side of caution and tell all patients not to look online. I can see their point really, especially if patients suffering from hypochondria in their care have previously done anything drastic. It’s a heavy burden to bear. Doctors have said to me in the past that they prefer to advise a patient not to look things up, but they will then research the illness themselves to double-check their diagnosis and find out if there is any recent research about the condition. Even for some patients who don't suffer from hypochondria, looking online can be addictive and stressful if the patient starts noticing every little thing the body does and analyses everything too much. The stress of thinking about what the body is doing is just too much for some patients to cope with. Particularly if a patient has previously suffered from a life-threatening illness or one that may reoccur, it can be difficult not to panic when a new symptom arises. While some people are able to deal with this, others find it too stressful to research online and read about lots of illnesses that could be caused by a symptom. It can be overwhelming when none of the illnesses sound familiar and there are lots of possible problems. Another worry for doctors is that a patient may read that other patients find certain supplements beneficial. When reading on the internet it is important to remember that some people are allergic to certain supplements and some medications may interact badly with supplements. If you feel that a supplement or dietary change may help you, remember to check with your doctor before starting on it, in case your other medications may not mix well with the supplement or in case there is any other reason why your doctor feels that it would not be safe for you to take the supplement or change your diet. If you have more than one medical condition, supplements may affect one of your problems in a beneficial way and another in a negative way. Support forums are another bone of contention for some doctors, who feel that patients who compare stories will become depressed reading about the things that they miss being able to achieve or reading stories of people who are suffering badly. It can be a bit frightening to some patients to realise just how bad they could feel if their symptoms progressed. When choosing a support forum online it is important to be comfortable with the tone of the discussions in the forum. If there are lots of depressed messages you may find that it gets you down, or you may find that it makes you appreciate your own health more, if your limitations are not as bad as other members of the forum. Your reaction to messages can depend largely on your personality or mood, so you may find that some days an online forum helps you, whereas other days it upsets you. Try to notice your reaction to any forums you visit and realise when it is better for you to avoid the forum for a day or two. There are of course many advantages to researching symptoms and conditions online or using a forum. As in your case, an ever-increasing number of patients are finding out about conditions that could explain their symptoms and in many cases this leads to the patient asking their doctor and discovering that their suspicions were correct. Sometimes the patient mentioning one illness causes the doctor to think of another that could be the root of the problem. In these cases where the patient is put on a new treatment regime that is more appropriate to the new diagnosis, it is hard to even contemplate not using the internet in the future to find out more. You may find a forum a fantastic morale-boosting opportunity to help others if you are coping well with your symptoms, or you may use it to ask for advice or to vent your own emotions. Many patients discover a lot of coping mechanisms from reading messages in online forums about things that help other patients. Remember that your doctor is only trying to protect you in case you would not cope with the new information you may find online. It is impossible for a doctor to know how you personally will react. At Diagnose Support we encourage patients to arm themselves with as much information as possible, but we do firmly advise that patients discuss all information with their doctor before acting on it. We provide warnings when mentioning certain supplements that people are often allergic to, but ALL lifestyle changes, treatments and information should be discussed with your doctor before you make any changes. Diagnose Support aims to raise awareness about invisible illnesses, in the hopes that those who seek information will be able to find it more easily and those who do not know what is wrong with them will find out earlier on in life. I hope this response has helped you to understand your doctor’s concerns and see this topic from a different viewpoint. I am glad that you have found the internet helpful in finding a diagnosis. Knowing exactly what is wrong can make it a lot easier to find coping mechanisms, as well as the reassurance of just knowing why you experience certain symptoms. I personally wouldn’t dream of not using the internet for research and visiting support forums, but it is important to understand why some people are wary of the use of internet by patients. Best wishes, Prickles! |
