When I first became unwell, I looked for others with a similar diagnosis. Some of what I found on the Internet was irrelevant, false, overblown and some even downright dangerous. Even the offline support groups I found were often moaning sessions rather than anything constructive. It took a good while to find some networks and resources which were actually helpful. I thought it best to share my experiences and how I made the best of web-based support networks.
Beware naysayers and toxic positivity
Many people like to share negative aspects of chronic illness and disability over the positive ones. It’s really important to know the drawbacks, but solely focusing on the negative aspects doesn’t help anyone. There are many people who go on to live quite fulfilling lives with chronic health conditions and disabilities. Modifying how you do things can open up a world of possibilities. But the Internet can be a soundboard for people moaning. At the same time, avoid those who are overly positive and believe everything can be cured with positivity. I would describe this approach as toxic positivity. I feel a balance between both is the best position. Pragmatism and practical solutions are often the best policy in my eyes!
Don’t focus on everything being diagnosis specific
Some of the best support networks I’ve come across share a situation with me rather than a diagnosis. Both The Mighty and Awesome Wheelies aren’t specific to my particular condition. One is for those with disabilities and chronic illnesses, the other for those that use wheelchairs or mobility scooters. Both have become incredibly helpful.
Do look for advice specific to your location
In some ways I feel this is the most important point I have to make in this blog. The information about both treatment and benefits available differs wildly from country to country. Get advice tailored to where you live. Certain medications are only available in certain parts of the world. You can’t compare experiences of someone treated on the NHS in the UK or with private insurance in the US. People with the same condition with have varying experiences with similar treatment.
Do not take what someone has to say online as gospel
Always make sure you verify any research you come across. It doesn’t matter if this is peer reviewed research in a Medical Journal or it’s something written on a blog. People get things wrong! Don’t let it be something crucial to your health!
Try using terms like spoonie or wheelie
Using collective terms in searches can be helpful! A lot of people come together under the term spoonie. Meaning someone that has a chronic health condition. Wheelie is another widely used term, meaning a user of a wheelchair or mobility scooter. Those with EDS are often known as Zebras. Those with Fibromyalgia often use the term Fibro Warrior. Using these kind of terms might help you find a community which clicks with you!
Don’t let it become all consuming
When you are bedbound or housebound, it can be easy to let internet support networks over take your life and overshadow the support networks you have in real life. Online support networks come and go, whereas friends and family should be around for a lot longer. Don’t end up neglecting those you love because of what you find online.
Look for different types of support networks
Support networks don’t always need to come in the form of Facebook groups and forums. Articles, blogs, Twitter, Pinterest and Instagram can all be equally helpful!
I hope this was helpful and can help you make the most of internet support networks for those with chronic illness and disability.