Entitled to Compassion

These are my thoughts about telling women to be silent about their suffering without getting professional help to cope with the pain.

Empathy, understanding, love, kindness, goodness, friendship, and a listening ear should all start at the Church. They should come from Christians, firstly. And no matter how you live your life, telling women that talking about their pain without ever explaining if you got professional help is irresponsible. Maybe you read a GREAT book. I don’t know. But, you and Jesus did not work it out on your own.

Shaming women into silence by insinuating that you’re superior because don’t bother other people with your pain is wreckless. Not everyone has had the benefit of professional help to learn to cope. If you don’t have credentials to offer tips, then you might want to back off. I haven’t read a blog in awhile, but I received several upset text messages yesterday. Enough to break my silence.

There is science to back up Cogitative Behavioral Therapy, Dialectic Behavioral Therapy, and other therapies to deal with chronic illness and pain, in addition to treating the illnesses, when possible, but not everyone has the benefit of starting immediately, having transportation, or even realizing that they need help at first. Most of society and the majority of the medical doctors that I’ve seen have never suggested dealing with my pain from a psychological standpoint. It’s a broken healthcare system. So getting on a high horse is kind of… well… just a bitch move.

Some people don’t realize that, diagnoses are hard to find or someone has several issues, so it’s hard to figure out what is going on with the person. Sometimes people continue to develop more issues or their current health conditions leave them open to more problems. [See autoimmune disorders.] The average person with one of my conditions waits 5 years for a diagnoses, and during that time, they can suffer permanent damage to their spine. No matter what, those therapies are coping skills. But guess who is in the position to tell people what to do? Doctors. Guess who isn’t? A blogger. A blogger can talk about their coping skills, share links, do whatever the fuck they want, so someone in pain can find help, but by making other women in pain feel “less than” because they share their pain, they may be less likely to get help. Nothing is more off putting. Think about it.

Personally, if I don’t say something to my family about my symptoms, I tend to forget that I had the symptom. It’s how I cope. I’ve coped with pain from my Tourette’s symptoms like that – by simply forgetting until someone would see me – almost my whole life. I’ll still forget if someone doesn’t say something to me. I’m 27. I can write things down, but when things skyrocket to 12 out of 10 (yes, that’s real), I don’t write. I scream. Don’t worry. I’m not instagraming either, in case anyone was worried.

Sharing your story and the human experience is one thing. In fact, being a gifted writer with a story to share is amazing, but don’t undermine it with statements that are easily misconstrued, misleading, or hateful.

A lot of people function normally. They hold down jobs and use their blogs to raise awareness. They tell their friends about their conditions when the condition will affect their social activities. The end. Who has the right to stop or shame that? It is the prerogative of the person who writes and posts, but still… yuck.

Other people are homebound. Or maybe they work, but they don’t connect with other patients. Some people live in small cities where public transportation and large social activities are not available. Getting sick wasn’t in the plan, so no one decided “hey, I should move to a metro area with a great subway system and good doctors, so I can get around and meet other people!”

But just because someone wants to connect with other patients and tags an instagram photo #spoonie, it does not make them less of a person. It just makes them someone seeking community. I am confused about why anyone would need to belittle a person who wants to find that.

I have the third most common movement disorder in the United States, but I never met another person with Cervical Dystonia in person until I attended a conference in person. Now, I belong to a private facebook group. The group that helps me the most is not the cervical dystonia group, but rather a group of people who have all sorts of disorders (we call ourselves alphabet soup) where we can ask questions from people who have had arthritis for 20 years, or just share a funny story. There is connection there that I won’t ever find in my personal life.

Basically, anyone can write whatever they want, but I still don’t think they should…

Comments are closed because I don’t care about what a single person thinks today. I’m not a professional, but I sure do know a ton about suffering. Sorry for sharing. If that offends you, again, just move on. I’ll post puppy pictures or something about books in a few weeks. I have this “pain” problem.



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