Use online support groups for your disease wisely - Facebook cannot replace your doctor

Anyone diagnosed with a chronic condition, whether kidney disease or something else, inevitably has problems, minor and major from time to time. All we want during times like these is to get rid of the problem as soon as possible. 

In today’s world where social media usage is increasing rapidly, it is only expected that we turn to networks like Facebook for help in dealing with a chronic disease. Most diseases have one or more Facebook groups or pages where patients flock to get both emotional support and answers to perplexing questions. In the age of instant gratification, this method of getting answers is much easier compared to the hassle of getting an appointment with a doctor, trudging to the clinic or hospital and then waiting there for your turn and then finally getting some advice. If you’re prescribed some additional investigations or referred to another specialist, then the wait for answers and a solution becomes even longer.

However, we must all understand the gross limitations of ‘social media consults’. Facebook and other more traditional support groups rarely have doctors  active on them waiting for questions to be posed and who will jump in to answer. Most likely, it is fellow patients who are as unqualified as we are in medicine who will respond the fastest. Their intentions would be the best, no doubt. However, their expertise is limited to their own experience. Some of them may have been dealing with a condition similar to ours for longer. But every individual is different and advice given out on such support groups must never be taken as a substitute for medical advice.

There are things however where such groups are immensely useful. One example is to hear from patients about how they dealt with a certain problem. Another possible instance is to get the take of different patients on which modality among a set of modalities they prefer and what they like or dislike about a modality. 

In the kidney disease context, I can think of the choice between a Kidney Transplant, Comprehensive Conservative Care, Peritoneal Dialysis and Hemodialysis to be one possible aspect where support groups can be useful. Many patients have heard only of the first snd last from their doctors! While no one on such a group can be qualified to answer which modality is the best for a particular individual, it would be enlightening for someone recently diagnosed with Kidney Disease and progressing to kidney failure to get thoughts about each of the modalities from people who have actually experienced them. Some may have experienced more than one. Their experience would likely be that much more useful.

Another aspect where patients could benefit from such groups is to get support in troubled times. While personally, a red heart or “hugs and kisses”, “sending prayers your way” does not do much for me, I know there are people who really benefit from such messages. If nothing else, it serves to remind them that they are not alone. There are several other people with similar problems.

Here’s a list of things you can use social media and online support groups for:

- Get anwers to general questions about your condition
- Get opinions about pros and cons of a particular treatment and therapy
- Get details of experiences of a particular treatment (‘what side effects did you experience when you took this?’)
- Ask for how long something took to settle (‘how long did your AV Fistula take to mature?’)
- Ask about how a particular episode panned out (‘how did the exit site infection of your PD catheter go?)

Even in the above list, never, ever change your treatment without discussing with a doctor. Remember, every individual is different. What works for one person may not work for another. Use advice received on such groups merely as a lay person’s opinion. This can never be a substitute for medical advice.

Here’s a list of things you should not use social media and online support groups for:

- Ask for answers about a condition very specific to you (‘My pet ant has a pimple on the dimple of her left cheek. What can I do?’)
- Ask if you can take a particular medicine, if you can stop it or if you should change the dosage 
- Ask specific questions about your diet. Especially in kidney disease, diet is highly dependent on your lab values and what works for one may not work for another 

Remember, social media and online support groups are an excellent source of support. They should however, never be treated as a substitute for medical advice. People who are answering questions on such groups must also refrain from giving advice that can be construed as a substitute for medical advice. People diagnosed recently might not be aware of some basic aspects of the disease. They may not even be aware of the risks of following everything one reads online. In such circumstances, it would do everyone a lot of good to use social media and online support groups as sources of support and general information only.


Huzaif Ansari said…
Hi Kamal m surprised to read about ur journey. Youre amazing. I am from mumbai and m also suffering from AHUS from 2015.i know the feeling of being sick with AHUS. I also tried every possible thing to get out of this dead end but couldnt.i am 25 now. I have also been rejected for eculizumab. i am scheduled finally for transplant after 22 days with my father as a donor.can u please connect with me or share some more setails about ur journey which myr help mine.? Gmail id- .facebook id - synnz.ex. please leave a message ill drop u my contact number for watsapp :) wish u luck