When Friends Say I Talk Too Much About My Chronic Illness on Facebook

Recently I was taken to task about my disease and told that I talk too much about it on Facebook.

I went through my postings for quite a ways back, and I noticed that most of my disease-related posts were about current articles, news or information. I have many Facebook friends who also suffer with myalgic encephalomyelitis (ME), and other related invisible illnesses and we share articles and information as it comes out across the medical outlets on the Internet. Mainly this is because there is no centralized information source, and what research that is being done is scattered and independent from each other, and that research is not well-funded.

After speaking to others about their experiences and reading the blogs of other people with invisible illnesses, I realized this response is very common. “Don’t talk about your illness anymore. We are tired of hearing about it. We don’t need to be reminded. We understand, now move on.”

No, you don’t.

There are a lot of aphorisms people use about understanding what a person is going through, or experiencing. “Walk a mile in their shoes,” “You don’t understand unless you have experienced it yourself” and other similar sentences. Actually, they are very accurate, and for those of us in the sisterhood (and brotherhood) of these invisible illnesses, we can identify closely with one another, and that gives us great comfort.

There is a great blog by Steve Mueller on Planet of Success about empathy and how to develop it, if you really care enough to do that. A good quote:

“Surprisingly, the ability to empathize with others is relative to a person’s capacity to identify, feel and understand their own feelings and thereby being able to project one’s feelings onto others. This means in turn that it becomes complicated at times to understand what a person is undergoing, if you haven’t undergone it for yourself — or at least felt similar feelings.”

But it takes time, and a real desire to do so. Most people who say they “get” ME have read very little about it, and think that basically it means “you get tired a lot.” Well, yes, there is a tremendous amount of constant overwhelming fatigue, which feels like you are trying to walk through molasses, but that is way beyond tired.

ME symptoms may also include cognitive dysfunction and impairment, sleep disorders, non-restorative sleep and post-exertional malaise. Common conditions that often occur alongside ME include fibromyalgia, irritable bowel syndrome, dysautonomia or postural orthostatic tachycardia syndrome and chemical intolerance. Each person with ME has differing degrees of the sub-illnesses.

What I am pointing out here is that A. we are not often believed, even by medical personnel, B. we are not often believed by friends and family and they drift away (they think we love the drama), C. we have lost everything from our earlier life, and D. there is very little compassion.

Another reason that I talk about it is because there is no one advocating for ME. We have no recognized celebrity who speaks in public service ads on TV. That’s part of the issue — when you have this disease, it is difficult to advocate for yourself. I can’t travel, make speeches, spend days involved with some governmental sub-committee asking for research grants or even speak eloquently on the telephone. When I try, I suffer serious setbacks that may last for months, even years. So, there is the catch-22. And yet the disease has been around for generations. Now, with the Internet, there is an opportunity to press for help.

If you have friends or family members who suffer from this or any other invisible illness, take some time to research and learn the basics about what they struggle with. Take time to ponder what your life would be like if it were you. Really ponder it, imagining yourself going through each day approaching life through their skin. Then practice compassion, a muscle that gets stronger with use. The problem is that it takes effort to do this, to not forget them and not get angry or irritated by their inability to live the way they used to. Accept the paradigm shift and then let them know you accept them as they are.

And most importantly, remember that when they express pain, sorrow, grief, sadness, it’s their way of screaming out to the world, “I hate being this way and having no recourse to anything else! I want my life back!”

And you should really listen.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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