NOTE: this post is not to lower the reputations of those in the medical field. Medical professionals deserve to be congratulated for their unwavering hardwork and success in helping others in their time of need. The medical staff referred to in this post did what they thought was best, given that they knew very little as to what was wrong. Please do not refuse medical assistance if you feel it is needed.
Unfortunately, with chronic illnesses like Cerebral Palsy and psychological disorders like PNES, physical pain and misunderstanding is sometimes inevitable. It holds us back from the things we want to do, it tears us down and can lead to us feeling intensely discouraged. As much as my life is full of blessings and laughter, I have also felt tremendous pain, either in surgeries, physical therapy, BOTOX treatment or falls. But people don't usually think about the emotional pain that one might feel, especially with a condition that is generally not visible. PNES is such a disorder. It goes under several names, one of them being Pseudo-seizures. The word pseudo means fake, and though PNES greatly resembles an Epileptic seizure, they are not. They are caused by eustress or distress, and so it is very easy for people watching to think that since it is not caused by physical problems, the person having the attack is faking it or trying to get attention.
A concerned mother recently wrote about her 10-year-old daughter's PNES experience on an official PNES website. The DOCTORS told the mom to leave her daughter during the attacks because she's just convulsing for "attention" and has to learn to "snap out of them". The doctors told her not to give the girl any "extra attention". I replied, explaining in great detail what often causes the attacks and what it feels like, and why it is imperative that the child not be left alone during the attacks - if not to ensure her physical safety, to do so for her emotional and mental wellbeing. There is nothing worse than feeling utterly vulnerable and not having someone there to offer you comfort and support in your time of crisis.
I recently had an ordeal while in the ER the other day that included extreme physical, mental and emotional pain.
I had been having a PNES attack at school for more than an hour, and an ambulance was called. Shortly after I got to the ER, (I was pretty calm by then, but still nonverbal) I started convulsing again. The nurse called a doctor in. I could hear him, but was too deep into the attack to see his face. "Let's get some pads on these rails. Turn her on her side." So, they did. After a minute, I spit up on the sheet and growled in my nose. It was labored, but then I fell limp. They slowly turned me onto my back again. I was in a severe daze. I could hear, couldn't talk, couldn't see any faces. I heard the doctor say, "that looks like a definite seizure." A couple minutes later, I convulsed again as they turned me. I slowed, I spit up, I growled, they turned me on my back again. "Let's get an IV in her in case we need to administer seizure med."
Just then, the blood pressure cuff on my left arm started squeezing. Hard. Really hard. It hurt. I couldn't move my arm at all for probably a good 30 seconds. But right as the cuff made my left arm immobile, a nurse had prepared a syringe. I couldn't talk or give them my left arm for the IV. They took my right arm, and they forced it palm-up, and for the first time in my life, my right arm - which has never, ever been able to flip - was completely palm-up. It was as if someone took your foot and forced your toes to face behind you COMPLETELY. My natural high muscle tone kicked in. Just like stretching your arm out when you sleep is your arm's relaxed state, my right arm ONLY relaxed when flexed at the elbow, toward my face. When it is not in that position, it is constantly tightening involuntarily. And the tone kicked in automatically, involuntarily fighting to flex, while the nurse pinned it and tried to stick a needle in it. It. Was. The. Worst. Pain. I have EVER. Felt. In my WHOLE life. I was in so much unimaginable pain, that I couldn't open my mouth. I was screaming so loud in my throat, I thought my eyes were bursting.
Automatically, I fought hard against the cuff (out of defense), desperately trying to free my good arm so I could push them away (or at least try to), but then I heard the nurse say to the doctor, "hold her down, please, she keeps trying to pull away from me." I wasn't 'trying' to; it was involuntary. It was a necessity that my right arm be allowed to bend at the elbow. One nurse held me legs and the doctor held down my torso and left arm. They thought I was having an Epileptic seizure, not PNES.
My arm was tingling fiercely from the squeezing cuff, but I frantically signed, NO NO NO NO NO NO NO NO NO NO NO... My mind was screaming OH GOD NO IT HURTS SOOO TERRIBLY NO NO YOU'RE DOING THIS ALL WRONG!! I was hurting so bad, I forgot how to cry. All I could do was swear and swear and swear in my mind. I was waiting to hear my arm snap. Because they saw my fluttering fingers as convulsing, they didn't know I was signing, and even if they had known, they would've probably thought I was saying no because of fear, not AGONY.
10 or 15 minutes later, my mother came rushing in my room, and I burst out crying. She stroked my hair and kissed me, and told me "everything's going to be alright. This will make you stronger." I sobbed.
"But I was alone. I couldn't talk. They were holding down. They put it in the wrong arm, Mama." She looked at the tube and saw a ring of blood diffused under the tape. The doctor came in.
"My daughter, I don't know if you know this, but she has Cerebral Palsy, she can't use her right arm. You were hurting her. She can't rotate her right arm." The doctor inhaled and defended, "well, her other arm was jerking. We couldn't have put an IV in that arm, ma'am. She was having a seizure."
"She has convulsive panic attacks, not Epilepsy. She can't speak during them, and was signing to you." The doctor frowned, but was still defensive. "There was no one that knew sign. We didn't know she was signing to us. We're sorry. Now you said she has Cerebral Palsy? Can she walk?"
"No. She's never been able to."
"It says in her paperwork that she can."
"Oh, no. She can't."
"Oh, we're sorry," he says looking at his papers. And leaves the room.
This really made me realize how much medical professionals really need to read their patients' paperwork. The experience also drove home for me, the need for people to be informed about conditions like PNES. In the moment, I really felt like just giving up on life... I was exhausted and frustrated, and didn't see how my "suffering" could have anything good come out of it. It was the most vulnerable I have ever felt, the most I've ever been tested in my life so far. It really challenged my mind to imagine being in a more ideal situation. It made me realize how tough I could be, when it was needed.
MY TIPS FOR HOW TO DEAL WITH PAIN (IN THE LIMBS) & WHY:
(ALWAYS consult your doctor before trying to treat pain yourself)
1.) Give the area rest - chances are your brain is sending pain messages to that area because you've either overused it or will harm it if you continue to. Rest your limb.
2.) Use Ice / Heat appropriately - consult your doctor about which would be the most appropriate. Often, heat helps relax spasm and cramps, while ice is known for aiding in bring down inflammation. You might not see the desired results right away. Always know that depending on your injury, one or the other may be the most beneficial.
3.) Imagine no pain - this takes practice, but people faced with chronic pain, become pros at it. Close your eyes and picture feeling relaxed and being in a area that is comfortable. Imagine being very active and enjoying life. Try to convince your body that is well and at peace. This does not mean you can use your injured limb whenever and wherever you want in reality - Always ask your doctor first. Imagining being in no pain can help keep your eye on the goal, and decrease your chances of dwelling on the discomfort, which leads to physical and emotional imprisonment.
4.) Breathe - breathing properly and peacefully helps make sure that your blood is circulating more effectively around your body. Make sure to not hold your breath when pain comes, because doing so will cause you to tense, and when you're tensing, you subconsciously begin to fear. Breathe in through your nose very deliberately, but slowly and breathe out through your mouth, keeping the exhale smooth and making it last. Repeat. You can also practice imagining your "happy place" while you focus your breathing.
5.) Keep your eyes loosely closed - the more we dwell on something, the quicker it makes itself a part of our daily life. Keeping your eyes loosely shut when pain creeps up helps remind yourself that you will not allow yourself to fully acknowledge the discomfort. When you do not fully accept the pain, you are giving your mind room to focus on the things that will help you through it, like Bible scriptures, positive mind pictures or meditation.
MY TIPS FOR DEALING WITH MISCOMMUNICATIONS OR MISUNDERSTANDINGS (OF A PHYCOLOGICAL DISORDER) & WHY:
1.) Research & Give Proof - most of the time, people need to know that there is an actual medical diagnosis, before they feel accepting of a phycological condition (like PNES). Show whoever will be helping you creditable information and sources, so that they know you are not faking or trying to get out of doing something. You can ask for a doctor's note, or find creditable websites like WebMD that may be of help in validating your condition.
2.) Don't Blame Yourself - this is very common for people who endure phycological disorders and have frequently experienced misunderstanding from those around them. It is important to never underestimate the power of the human mind. Even if it is absolutely not being done consciously, your brain could be sending various messages to different parts of your body, telling it to act or respond a certain way - these responses can be very REAL and INVOLUNTARY. Knowing that, try not to blame yourself for a phycological disorder. It's not your fault. If people don't believe you, frankly, it's their problem only.
3.) Develop a support team - a support team of loved ones and medical pros can help back you up in validating your condition and properly dealing with it. Knowing there are others who are fighting on your behalf, will increase your confidence and lower your anxiety about being mistreated (whether intentionally or not).
4.) Join a support group or online forum - it is always a GREAT feeling to know you are not the only one with your psychological disorder. Knowing that there are others who can empathize with you, brings peace and a sense of security. In these groups and forums, you can share your experiences and also receive some coping advice and learn about different treatment options that you can discuss with your doctor.
5.) Become an advocate - many times, after experiencing repeated misunderstanding or mistreatment with a condition, people become driven to change that (as was the case behind the ADA). Some ideas to help better inform and educate others regarding your condition can be:
- start a website or Youtube channel
- host fundraisers
- submit articles to various newspapers
- create a Facebook or Twitter page
- encourage others to participate in the disorder's National Awareness Day
- write to politicians, etc.
- write to celebrities
- ask to discuss the condition to your classmates