6 Tips on How to Have a Chronic Illness on Social Media

Are you on social media? Of course you’re on social media; everyone is these days. But if you have a chronic illness, be careful not to post photos of you spending time with people you like, or even smiling. If you do, it could get your disability claim rejected.

Kayla Barry knows this firsthand. A few weeks ago, she shared the rejection letter for her disability claim. In it, the doctor assessing the claim stated that the photos shared on her Twitter account showed a “young woman who is engaged in life activities, awake, smiling and also do not appear to depict an individual who looks chronically ill.”

Cue all of us having a meltdown. About the fact that the doctor does not appear to be aware of the concept of invisible illness, which is odd considering he was evaluating the disability claim for Barry’s fibromyalgia and chronic fatigue syndrome, neither hardly visible. About the insanity of the doctor not realizing that we share our best moments on social media. And I could go on, but it’s not the point of today’s post.

My point today is to share some tips on what you can do to avoid being in the same situation.

Remember social media is public
This might sound ridiculously obvious, but the fact is that being on social media can feel very intimate. It’s just you and your phone or computer and some friends Liking your posts or leaving a comment. But what you do and say online is visible to all and yes, that even goes for your private Facebook account. If you don’t want the world to know about your private life, don’t go on the Internet. If you do, think of it this way: assume everything is public and don’t post anything you wouldn’t say in a large room full of strangers.

Assume you will be investigated
More and more, companies are checking the social media accounts of job applicants, and it appears the same goes for disability claimants. Check out that photo on Kayla Barry’s blog again. That doctor answered a particular question regarding social media accounts on the form they used for their assessment. That means it’s a standard part of investigating a disability claim.

Decide to be out or not
Make a decision about whether you will be “out” online about your chronic illness. There are good reasons not to be — perhaps you don’t want your employer or community to know, or perhaps you want a place where you can be on a sort of vacation from having an illness. On the other hand, being open about your chronic illness can be really helpful in terms of connecting you with people who can support you through it. Weigh the pros and cons and assess your risk of for instance, losing your job, and do what feels right to you.

Show the reality of chronic illness
If you are open about having a chronic illness in your online journey, show the totality of your life. There is much that is wonderful and you should absolutely show that, whether it’s big events like getting married or having a child, or the small moments of going out with friends. But also show the bad days or the consequences of going out, such as having to rest for a couple of days.

Get help with your disability claim
Most disability claims are rejected on the first go around, but you can increase the chance of being accepted. Involve an advocate or lawyer in your case to make sure that all the documentation is correct and the forms are filled out correctly. DisabilitySecrets is a great site with lots of information on how to maximize success when applying for disability in the US. It also has links to advocates in every state that can help you with your application.

Live your life
At the end of the day, you have to live your life in a way that feels authentic to you and that includes your social media presence. Be yourself, enjoy your life, post what you want to post. Because here’s the thing. As my parents told me a long time ago, I have a choice about where I spend this life with chronic illness: I can laugh or I can cry. It would be one hell of a waste of life if I spent it only crying out of fear that someday someone would have the profound stupidity to judge me only on my smiles.


Rick said…
We need to be real but not real out there. It is a very real issue. Facebook is the equivalent of a stalking machine that we subscribe to voluntary.
Anonymous said…
This was a real eye opener for me..Im currently trying to get disability for Lupus and Fibromyalgia..thanks for the info!

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