Tag Archives: Mean people

What $50 Buys When You Have a Rare Disease/ Disorder

About a year ago, I went to a new doctor. My hip was dislocating, and my primary doctor thought I needed to see a specialist. The specialist was the “new doctor,” and let’s just say I was not impressed. I waited a couple weeks to see the doctor (by which point my hip pain went from excruciating to simply quite painful); I paid my $50 co-pay to see the specialist. I had the x-rays and preliminary tests the doctor requested. I followed the rules. I was as prepared as I could possibly be as a patient. I went into that appointment feeling as though I was holding up my end of the bargain wonderfully.

I wasn’t prepared for the doctor to fail me completely. Here’s what happened. The doctor talked to me for five minutes and made assumptions. When I told him I had a rare disorder called Ehlers-Danlos Syndrome, he nodded and said he had researched it. I told him my hip seemed to be coming out of socket. There was horrible pain and instability. When the hip was out of socket one leg was longer than the other, and the foot of the longer leg was turned to the side and would not face the front. The doctor chuckled and said it was impossible that I had handled a dislocation without going to the ER.

Have you even met me? I have EDS! I pop dislocations back into place daily. I’m asking for help keeping this darn hip in place- not asking for your judgment about whether or not this hip is actually dislocating. The doctor went on to tell me that during his research of “Eglers-Dallos” (What? Seriously, dude? No one even gave you a pronunciation guide?) he had never come across any data that showed that patients had pain or dislocation associated with the condition. He told me that if I really felt I was in that much pain he couldn’t help me, and the cause could be more psychological than physical pain. Seriously, Dr. Deficient, just because you don’t understand my illness, that doesn’t mean that I am faking it- or that it’s all in my head. (By the way, even if it were all in my head, you have a responsibility to me as your patient to assist me in getting help.) It means you need to educate yourself more. It at least means you need to do some serious work on your bedside manner. Did you skip that class in medical school? Are you kidding me? I paid fifty dollars to be laughed at and shamed?

Herein lies the problem for those of us with rare diseases/ disorders. Few doctors are knowledgeable about our illness. We are forced to play a guessing game of which doctor will give us adequate care- and which doctors will brush us off because they aren’t educated in our condition. Ehlers-Danlos Syndrome is somewhat rare- and proper physician education about the syndrome is even rarer. I understand that. I don’t expect every single doctor to understand my condition. However, I do expect all medical professionals to listen to me. Trust me to be an advocate for my condition. It is completely fine with me if you Google my disorder. I promise not to judge you for not knowing. However, if you make me feel ridiculous and silly when I am trying to explain my condition to you- that’s not okay.

Here’s the embarrassing part of this story- I didn’t say a word. I felt like he was accusing me of lying or at least exaggerating, and I was so ashamed that I couldn’t plead my own case. Even though I at no point wanted or requested pain medication, I felt as though this doctor believed I was just seeking narcotics. I was embarrassed. I felt criminalized. I left that appointment and sat in my car and cried like some kind of victim. I allowed that to happen. I am educated about my disorder, and I had every right to stand up for myself and tell that doctor that his “Eglers Dallos” research was wrong. But I didn’t. I nodded my head and said “thank you” and “I’m sorry” then cried in my car. Stupid. Just stupid.

For those of us with rare disorders, this is what we can expect in exchange for our co-pay, and that is not acceptable. This is why World Rare Disease Day matters so much to me and others within the rare disease community. On this day, we get to make a little noise for the disorders that few in the medical community discuss. We get to inform those on our social media and in our day to day lives what our disorders are all about. We get to spread awareness, so that in the future maybe other sufferers of our illness (and other rare diseases) won’t feel like a victim due to their doctor’s lack of understanding.

I am not bashing the medical community in the least. I have had the pleasure of meeting some fantastic medical professionals- doctors, nurses, physician’s assistants, etc. I am so grateful for the caring and considerate people I have met through various medical procedures and appointments. I am saying, however, that we as patients have to stand up and be our own advocates. Every doctor has a responsibility to listen to us- and every member of the rare disease community has a responsibility to make themselves heard. So, do me a favor, friends. This World Rare Disease Day (February 29, 2016) educate a friend, a family member, or your social media followers about a rare disease that is near and dear to your heart. I’m not asking that you share about Ehlers- Danlos Syndrome specifically. Share about Wilson’s Disease. Share about Charcot- Marie- Tooth Disease. Share about Retinitis Pigmentosa. Share about a disease that affects someone you love, because that person you love deserves a lot more understanding than what they’re currently getting for their co-pay.

Peace, love, and health.

** By the way, friends, I was eventually vindicated for my terrible doctor experience. Another specialist ordered an MRI of my hip. She found that my hip labrum had degenerated and was not capable of keeping the joint in socket correctly. Surprisingly, this new doctor went to medical school with Dr. Deficiency (not his real name- that was just the kindest thing I could think to call him) and sent him a report of her findings.

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Developing Selective Hearing (and other priceless chronic illness skills)

Words can hurt- maybe not quite as much as chronic illness, but they can definitely hurt. I was in a situation recently where a well- meaning person said something completely hurtful about how I manage my illness . . . and they were just making conversation. This person did not mean to hurtful or judgmental; they truly felt that their comments were helpful. They weren’t . . . at all. I realized there were a few ways I could handle the situation; I could get my feelings hurt (and maybe say something equally hurtful in retaliation) or I could trust that the person was not trying to be hurtful and gently educate about the nature of chronic illness. Obviously, the latter was the better choice, but it isn’t always easy to treat others with grace and kindness . . . especially if you feel misunderstood.

In the past few weeks alone, I’ve had people comment on me not working (when I look “completely fine”). I’ve had people tease my husband about not standing at an event when he was sitting with me because I couldn’t stand long enough to participate (Don’t worry. It wasn’t the national anthem or anything that was worth the health sacrifice.). Over and over, I have felt like I had to bite my tongue to keep from lashing out at people who truly don’t understand. I don’t want to be so hyper-sensitive to what everyone says that I cannot be around non- chronic illness people without feeling hurt or judged. I realize that not everyone can understand what I deal with, because they haven’t had the same set of circumstances. I’m glad they don’t understand; if they did, that would mean they’re stuck on this journey too. So, in an effort to remain a social being in the world of well people, I have decided to develop selective hearing. I don’t mean the type of selective hearing developed by husbands (“What? You wanted me to put my dishes in the dishwasher? You never told me.”), but rather, a type of selective hearing that will allow us to hear what people mean instead of the crazy (or hurtful) things people say.

What people say: You don’t look sick.

What I hear: You must not be sick. You look fine.

What I will choose to hear: Holy cow! You look incredible! I don’t know how you continue to look so fabulous when you feel so terrible!

(Yes, I realize I’m stretching the meaning a little. But, if I’m going to alter what others are saying, why can’t I give myself a little confidence boost in the process?)

What people say: Have you tried . . . . (insert diet, supplement, miracle pill, Billy Bob’s Magic Elixir, etc.)?

What I hear: If you really wanted to feel better, you would try whatever goods I’m peddling or method I’m supporting.

What I will choose to hear: I truly want you to feel better, and I’m suggesting thing in hopes that something would help you.

What people say: Have your doctors still not figured out what is wrong with you?

What I hear: If your doctors really knew what was wrong with you, you would be getting better. Doctors fix sick people. You should get better doctors.

What I will choose to hear: I regret that this is a chronic condition with no quick fix.

What people say: Wow, you live like a little old woman.

What I hear: Wow, you live like a little old woman.

What I will choose to hear: Wow! You look incredible (and not at all old!) while battling a chronic illness that has reduced your ability to live like the rest of us.

(Again, probably a stretch, but this is all taking place in my head. I can embellish!)

To my chronic illness friends, there are some people that are just jerks. Avoid them. People who say things with the intention to hurt you aren’t worth your time. Don’t invest what precious little energy you have on those people. The people in your life who truly mean well but say insensitive things, try to give them some grace. They can’t understand, and we don’t want them to ever experience this in order to empathize. It’s okay to gently educate. I’ve lost count of how many times I’ve had to say, “My illness is chronic, so I deal with it every day. Some days are better than others, though. Thanks for checking on me.” It’s okay to gently correct- “It isn’t my doctors’ fault that I am not better. I have an illness that does not have a cure, so all my doctors can do is manage my symptoms.” It’s also okay to just change the subject. “You know, I get tired of talking about being sick. Let’s talk about something that really matters- ‘Is that dress black and blue or is it really gold and white?’” (If you missed “the dress” internet phenomenon, I don’t advise looking for it.) Most of all, don’t burn bridges with the people that mean well. If a person cares enough to bring up your illness, they might be worth keeping around- even if they are a little clueless.

To my non-chronic illness friends, I’m sorry that I’m sensitive. I’m sorry that I misconstrue thing you say into something hurtful. Please keep talking to me anyway. I would rather you say a hundred accidentally offensive things to me than give up on our friendship. Thanks for trying.

Now for the fun part, chronic illness friends, what question or comment do you hear that drives you crazy? If so, share it in the comments.

Peace, love ,and health friends.

Life Isn’t Fair. Chronic Illness Isn’t Fair. And, Pamela is a Meanie Head.

I still remember when I realized that life isn’t fair. I was in kindergarten. There was a little girl who I will call “Pamela.” No, her name wasn’t really Pamela, but just in case she has grown up to be a perfectly lovely person (or even if she hasn’t) I don’t really feel right about bad mouthing someone via blog. (Yes, I realize that is a common practice, but we are striving for positivity here.) I was the only person in my kindergarten classroom who was smaller than Pamela, so she picked on me. It started with her biting my arm while we were watching Sesame Street one day. Physical injury escalated to emotional trauma when Pamela made fun of my Punky Brewster tennis shoes. (They were awesome, by the way!) I just did not like this kid; she was mean. One day, however, I found Pamela sitting on the ladder that led up to the slide on the school playground. Now, I had no intention of talking to Pamela, she was a meanie-head, but I really loved that slide, so I approached with caution. When I got close enough to see Pamela clearly, I realized she was crying. Even at five, there’s a ‘woman code.’ You always check on a crying female; you just do. Here’s what transpired:

Me: What’s wrong, Pamela?

Pamela: I don’t have any friends! Nobody wants to play with me! (Wail, sob, wail)

Me: I’ll be your friend.

And then, SHE KICKED ME!!

Now, remember, Pamela was sitting on the ladder of the slide. The little budding sociopath was high enough to have a perfect shot at my throat, and she KICKED me!

Okay, that happened roughly 25 years ago, and I’m still not over it. I don’t know what happened to Pamela after that incident. To be honest, I don’t remember any playground experiences after that one, so maybe I just hid inside for the rest of year. I’m not sure. I just remember sobbing- 1. Because she had just kicked me in the throat, and that’s hardly an area of your body that is prepared to take a swift kick. 2. Because I was willing to forgive the biting and the Punky Brewster shoe incident and be her friend, and she didn’t accept my offer of friendship.

Now that I have shared that ridiculous little morsel of my childhood, let me attempt to make some sense. You see, I realize that I’m not that much different now than I was then. I still expect that I will get what I put into life, but it just doesn’t work that way. And, much like my five year old self, I still run away sobbing because I didn’t get what I believe I deserve. I am a decent person. I try to be kind and help others. I go to church. I give to charity. There are a million ways that I fail, but I sincerely try to do what is right. So, why then, did I have to give up so much of my life before I even got a chance to fully enjoy it?

When I first became sick, during the awful months (that turned into years) of going to doctor after doctor while I kept getting sicker, I struggled to wrap my brain around the unfairness of the whole situation. Why was I having to give up the profession I loved when so many other people were perfectly healthy and complained about going to work every day? Why should my body make the decision of whether or not to have children for me instead of me getting to make that decision with Joe? Why? Why? Why?

Because life isn’t fair. It just isn’t. One of the things I have learned through all this is that bad things happen to good people, and good things happen to bad people. The only rule that is consistent is that things just keep happening. If that’s the only rule we have, then there’s only one way to play. We have to enjoy the life we have right now. Who knows what will happen tomorrow? It may be something so over the top wonderful that you never could live a good enough life to feel like you deserve it (and I truly hope that happens for you). However, playing by the same rules, there’s a chance it could be devastating, and you could be wishing that you could relive today all over before everything fell apart. Ultimately, I know that my day will be filled with more love than I deserve, and that’s a great feeling. So, yeah, maybe life isn’t fair. Maybe there will always be Pamelas that will kick me when I’m trying my hardest to do what’s right, but hopefully I’ll eventually learn to quit sobbing about it.

Peace, love, and health, friends.