Are Online Support Groups Helpful for People with Pain?

A few years ago, while talking to my pain clinic doctor, I told him that I think online support groups are helpful and that I run one for trigeminal neuralgia sufferers. I asked him if they ever ran patient support groups within the clinic and was shocked when he told me that he thought support groups “are depressing and turn into a moan-fest.”

In my Opinion, Online Support Groups are Helpful

Perhaps some support groups are like that, but not all of them. They are often informative and can actually be fun as well as supportive.

When I was writing my awareness day posts about trigeminal neuralgia, I asked TN sufferers to fill in a questionnaire. One question I asked was, “How important are Facebook support groups?”

The answer to that particular question time and time again was, “The support groups are extremely important.”

12 Reasons why Online Support Groups are Helpful

I don’t agree. I believe that online support groups are helpful for many people who live with pain or any kind of chronic illness.

Here are 12 reasons why I think this:

1. Online Support Groups are Easy to Access

There may be a support group locally, but when you live with pain or chronic illness, it is often difficult to access them. Online support groups are helpful because it is so much easier to open a laptop or scroll through a phone to chat with like-minded people at any time, day or night.

It doesn’t matter if you are wearing your pyjamas or you need to wash your hair because nobody can see you. And if they could see you, they wouldn’t mind. They would understand.

2. Two Words – “I Understand”

Due to their pain or chronic illness, life can be extremely difficult for many people. It is often overwhelming and emotionally draining. People might feel anxious, hopeless or depressed about their illness. Getting support is crucial when they feel that way.

Hearing the words, “I understand” means so much to someone who is living with a health condition because very often, they believe nobody does. When they share their lives on support groups, those words mean that someone really does know exactly what they are going through. It can strengthen and encourage them.

“They are really important. The members are the only people who understand my pain. It’s sad – I wish my family understood more.”
~ Emily Rae Wood

3. Support Groups Provide a Safe Place to Talk

A support group can offer people a safe place to vent or talk openly and honestly about their problems without facing judgement or criticism. To know that they have somewhere to reach out for help and support when needed is vital.

“Support groups are extremely important. I can talk to people who are in the same situation. I have an outlet to just vent when no one else will understand.”
~ Sarah C.

4. Learning

Unfortunately, some doctors don’t offer their patients much advice or information. Therefore people often need to search for answers themselves. Online support groups are often a great source of information about the condition and treatments. People can also learn about the best doctors to see and get tips from other sufferers.

“Support groups are very important. It helps knowing you are not the only one. There are people that can help you by sharing their experiences of different medications, tests and treatments.”
Katie

The internet is full of information about health conditions but it is not always accurate. Information in support groups is helpful, however people should always discuss medical advice with their doctor.

5. Life with Pain or Illness can be Lonely

As I’ve said before in other posts, people living with a health problem can become extremely lonely and often feel very isolated. But being part of a support group and being able to see a friendly face every day can make a huge difference.

“Support groups are a lifeline for me as I can see I’m not alone and someone understands. My family have not even googled the name Trigeminal Neuralgia. This hurts me and makes me feel lonely and unsupported.”
~ Yvonne

6. Friendships

I’ve met many friends from all over the world thanks to online support groups. I’ve never met these people in real life, but they are real friends. We don’t just talk about pain. We chat, laugh and put the world to rights. The only thing we don’t do is meet for coffee.

My pain has changed my social life. I lost my old friends because of it. But I have friends again thanks to the TN support groups.
~ M.R.

7. Rare Conditions

Online support groups are helpful and important especially when someone has a rare condition like trigeminal neuralgia. If they are ‘rare’, people often feel as though they are the only person in the world living with that condition. But in a support group, they discover other people with the same condition. It makes a difference.

“I no longer feel like I am crazy. I never realized there were so many other people who suffer from this disease!”
Mardi

8. Awareness

People often feel that their condition is forgotten or ignored by both doctors and society. But awareness helps and it can bring people hope. Support groups play a vital role in bringing awareness because members can share information. By doing so, non-sufferers can learn more about the condition.

9. Pain Distraction

People do need a shoulder to cry on at times, but online support groups often offer pain distractions too. Most groups I belong to have fun quizzes, photo and news sharing posts to promote a positive vibe. Those posts give members something else to think about other than their pain. When you live with constant pain, even just a few minutes of respite is good.

10. A Sense of Purpose

Many people who live with a health problem feel that they are of no use to society because they are unable to work or complete normal daily activities. When they answer questions and offer support to other sufferers in groups, it makes people feel useful and needed. This can bring about a new sense of purpose giving people a morale boost.

“I think providing support is more important to me than getting it.”
Kathy J.

11. Family and Friends need Support too

Groups can also be useful for the sufferers’ friends and family because, just like the sufferers, they need support too. They can also get a better insight into life with the condition by being part of a support group.

“Support groups are very important. My wife is my caretaker and she is very thankful for all the support and information.”
Terry

12. Belonging Without Contributing

Many people are members of groups but don’t take part in discussions. They enjoy reading posts and learning but they prefer not to contribute. But that’s fine because they’re doing what feels right for them.

“Support groups are pretty important. I might just be a lurker but I’ve learned way more in the group than anywhere else.”
J. Hinojosa

We are all Different

Obviously, every group is different and every person is different. What suits one person might not suit someone else. They might not be for everyone, but, in my experience, online support groups are helpful.

Are you a member of an online support group? Do you find it helpful? Please leave a comment below.

Thank you to the members of trigeminal neuralgia support groups who have contributed to this post.

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