Monday, November 23, 2015

Broken trust: The consequences of doctor anxiety

Hi, I'm Shelley and I have doctor anxiety.

What? You've never heard of it?

It's more than just having your blood pressure go sky high every time you're at the doctor (yes, that happens to me). It happens when you've been told so many times by doctors that you're a hypochondriac or you're depressed that you stop going to the doctor when new issues with your health come up. And it can be a huge problem.

If you want to read the long version of my story, here it is. The short version is that I got sick, went to dozens of doctors that told me I was crazy, and then finally got diagnosed after a year and a half. The time I spent undiagnosed and sick basically disabled me for life, thanks to doctors not listening. That year and a half that I spent being told I was crazy, plus all the doctors since that didn't believe my diagnosis affected me. I hate going to doctors and I don't trust them to listen, so I put off medical problems in the hopes they will go away. And unfortunately that backfires.

I got myself into trouble recently. I was in a lot of pain, and I could tell my body wasn't working right, but I didn't want to go see a doctor. I was convinced they would pat me on the head and send me home with instructions to take Tylenol so I suffered for 3 weeks knowing that something wasn't right. Until the pain got so bad that I started violently throwing up and I was convinced I was going to die. I found out I had a kidney stone that was so big it was stuck, which also caused a kidney infection and more.  It was a problem big enough to be admitted to the hospital, and then I had to have surgery. Turns out it was a serious complication and the doctors all took me very seriously. Whoops.

I am not the only one with potentially dangerous doctor anxiety. It turns out there really is something called "white coat syndrome" which can be found in as much as 20 % of the population. For most patients at most it involves high blood pressure at the doctors office, but for people like me it is much more serious. We delay potentially life saving medical treatment out of fear. I should have gone in when I started hurting. The end result would have been the same, but I could have saved myself three extra weeks of pain and suffering and a late night ER visit. The fact is though that this is the very real result of having a history of being badly treated by doctors.

There's no easy answer to this problem. In an ideal world all doctors would not be jerks and would treat their patients like actual human beings, but that's not realistic. For me I have learned that in the future I need to trust my body and my instincts that something is wrong, even if I can't get a doctor to believe me.  No more giving up just because a doctor blows me off. From now on I'm going to keep trying until I get answers or I go broke trying. 

Tuesday, November 17, 2015

Feeling alone when you're chronically ill

What's it really like being sick?

It's lonely.

There is a barrier between you and most healthy people. Healthy people want healthy friends. They want friends they can regularly rely on. They want friends who's lives are not regulated by pain, medication, exhaustion, sleep patterns, and doctors appointments. Very few people can see past these barriers to see the person you are, and who can blame them. 

They can't see that you have a sense of humor because they see you when you are tired and hurting and they think that is you

They can't see that you love helping other people, but because you are so sick you can hardly take care of yourself.

They can't see all the things you want to do with them and participate in, they can only see that you flake out a lot. So they stop inviting you.

They can't see that you are strong and brave and every day you fight a battle just to meet your basic physical needs. They can't see the effort it takes to just move your arm or put on your makeup or get outside the house. Your strength is invisible.

They can't see how you long to be normal and to be a normal friend, all they see is that you periodically fade out of their lives for no discernible reason.

They have no idea what it is like to try and live a normal life when you are not normal. When everyone has expectations for you and you constantly fall short. When you are constantly being pressured to do something you physically can not do and treated with contempt when you inevitably fail.

 They don't get it.

So they drift away and move on because you can't be a good friend. And it hurts.

The truth about being sick is that you pretty much have to handle it yourself...alone...and it sucks. Even the most understanding healthy person can't really comprehend what it's like to live this life. They don't understand what it's like to be left behind again and again and again. It makes you feel small. 

Then when you try to cross the barriers of communication and explain your hurt, people just think you are just self centered. That you talk too much about yourself, and you think that you are the only one who is important. You think too much about your illness, you should just think about something else instead of focusing on it all the time. And maybe you are guilty of those things, but you have to be just to survive. Being sick effects every single aspect of your life and who you are, and it doesn't just go away. Being sick is a long, hard, lonely journey and it's a journey without a destination. 

Thursday, November 12, 2015

Ode to hospital mesh underwear

*Warning TMI ahead

Can I just say how much I love the mesh underwear you can get from the hospital? It saved my life after my two c-sections, and it saved my life this week after having surgery to remove my kidney stone. Because nothing uncomfortable is going near my abdomen right now.

I used to think I was a freak for liking mesh underwear so much, and then one day I had a random conversation with some friends about it, where we all admitted with shame that we thought it was awesome. So I know I'm not alone in this.  Loving hospital underwear is a dirty secret that most of us would never admit, but today I'm putting myself out there and laying it all on the table. I LOVE HOSPITAL MESH UNDERWEAR.

So here's some great news for the other secret mesh fans out there, you can buy it on amazon! I'm going to go buy like 20 pairs and model them for my husband (okay, not really, but if I ever have another abdominal surgery, it's happening). 

So no more shame guys. No more shame for disdaining those frilly pink Victoria Secret thongs and going for the ugly, mesh, but oh so comfortable granny panties. Just embrace the mesh. Walk around in full comfort. Walk around secure in the knowledge that you are doing what you love, wearing comfortable underwear. No one will ever know, as long as I don't tell on you.

PS- I was going to link to them on Amazon, but I thought that might be too much, You'll just have to go discover them on your own! 

Wednesday, November 4, 2015

You can't just "try harder"

I found myself walking out of a meeting recently. It wasn't a situation where anyone was trying to be insensitive or judgmental, and I wasn't being criticized. Everyone speaking had the best of intentions. It was people talking about how we collectively all needed to do more, to just work harder, to just put in more effort. Because if someone isn't succeeding, they must not be "trying hard enough". Even though I knew they weren't talking about me, I found myself walking out. I walked out because I've been told I need to try harder more times than I can count, and I couldn't bear to even hear the words again.

 Those words are typically directed at people who a viewed as failures of society and I am one of those people. They are people who might live in poverty or don't do well enough in their jobs. People who don't prepare for emergencies, people that have to ask for help and assistance. It is often assumed that those kind people are just lazy and unmotivated, but the reality is that a large number them suffer from a mental or physical illness. And you can't tell someone with a mental or physical disability to just try harder and *poof*, make their problems go away. Life isn't that simple.

I'm trying as hard as my body will allow, and I'm still always going to be viewed as a failure. I'm always going to have to ask for help, I'm always going to be dependent on my husband for income and medical insurance. That makes me a lazy failure in some ways, but I still believe that there is more to life than just trying harder. If all it took was effort there would be a lot less suffering in the world. The "lift yourself up by your bootstraps and have amazing success" story is a myth. When people can't lift themselves up by their bootstraps we assume it's because they deserve it, but just because you are in a bad situation doesn't mean it's your fault. I don't deserve to be sick and I don't deserve to be treated like a failure just because I can't get better. If all it took for me to live a normal life was some effort on my part, don't you think I would do it? I've put an extraordinary amount of effort into just existing. I have:

changed my diet
changed my exercise routines
taken mountains of vitamins
tried herbal remedies
seen dozens of doctors
tried every medication recommended to me by doctors
tried to go without any medication to erase my dependence
made all my food from scratch
gone gluten free
gone dairy free
gone soy free
gone caffeine free
switched all my cleaning products to natural options
tried to have a good attitude
tried not to be depressed
tried not to be angry
tried not to be sad
tried to be happy
tried to accept my lot in life
tried to fight for a better life

At what point have I tried hard enough? At what point am I no longer a lazy failure? Will I always be a failure because I'm viewed by other people as being one? I don't think so. Illness is not a failure, it is a circumstance of life. What helps that change that circumstance is:

A) dumb luck
B) a good doctor
C) large amounts of money

The majority of those things are outside most patient's control, including mine. Telling people who are chronically ill to "try harder" is not only misinformed, it is offensive. If you want someone to become less of a "failure" you're going to have to provide them with resources, Better doctors, better healthcare, more at home assistance etc. And that is something is not easily fixed.

Wednesday, October 28, 2015

Coping with the stress of being sick

Being chronically ill comes with a lot of stress. Off the top of my head I can think of a number of ways illness causes stress:

Trying to find a doctor who will help you
Managing prescriptions
Going without sleep for long periods of time
Trying to manage the impacts of illness on your relationships
Dealing with feelings of guilt
Not being able to get done all the things you need to
Always having more medical bills to pay
Dealing with feeling like a failure
Managing new symptoms and trying to find out if they're related to your conditions

Being sick is just straight up stressful. So how are we supposed to deal with that? Before I got sick I worked out my stress when I was exercising. Post sickness I tried yoga to see if it would have the same impact, it didn't. When I'm stressed yoga is just pointless. As the yoga instructor tells me to stretch my body in impossible ways and to simultaneously relax, all I feel is rage and annoyance and stress because I can't do it right. Because those positions are NOT relaxing unless you are a human version of Gumby.

I've also tried meditation, which can work sometimes, but not when I'm stressed. My thoughts are way too persistent to allow any form of meditation. As I'm being told to empty my mind all my mind can do is focus on all the things that are stressing me. All the normal, not stressful thoughts are gone and all I can think is OH MY GOODNESS I'M SUCH A FAILURE, I CAN'T DO ANYTHING RIGHT! I CAN'T EVEN MEDITATE RIGHT. WHAT IS WRONG ME WITH ME? WHY CAN'T I STOP THINKING? WHY AM I SITTING HERE WHEN I HAVE SO MUCH TO DO? As you can imagine, that's not productive.

I suppose if I drank that would temperately relieve stress, but I don't, and I'm not about to start now. That's probably not a good long term strategy either. Stress eating is not really a good idea, considering I only get a limited amount of exercise and I'm trying to take better care of my body. I do find it relaxing to be in nature, but I live in the suburbs of a city with 4 million people so the nearest nature is some distance away.

So how do I deal? With a long list of various coping techniques that sometimes work in conjunction with each other.

Reading- A good novel always helps me to get outside my own problems and focus on something else.

Helping someone else- Sometimes I need to stop focusing so much on myself and think of someone elses problems. It helps me to realize that while chronic illness has taken over my life, plenty of other people have significant problems to deal with too.

Sunlight- While I can't enjoy actual nature, it helps to go outside in my backyard and soak in some sunlight. Sun almost always improves my mood, and an improved mood helps me to deal with what is stressing me out.

Friends- Laughter is always the best medicine, which usually comes when I spend time with friends. It just helps to connect with other people.

Music- Music has always had the power to sooth my soul. Listening to calm music helps me to relax.

Unfortunately there isn't one easy solution for stress caused by chronic illness. The important thing is to find what technique works for you and to make sure you apply it when you can feel yourself getting overwhelmed.

Friday, October 16, 2015

I am the person

I am the person who once lived an active life. I exercised, I played sports, I spent time outside. I worked long hours and still managed to spend lots of times with friends. I didn't have to prioritize much because I had the energy to do anything. Now I am the person who mostly stays home. I only have the energy to go out every once in a while. I can't exercise for very long or very hard. I no longer play sports because they are too high impact. I have to decided what my top priorities are and every thing else just doesn't happen. I don't have the energy to do everything anymore.

I am the person who once had it all together. I had the clothes, the hair, and the makeup. I wouldn't think about showing my face in public without looking presentable. Now I am the person who always looks tired or stressed. I no longer have the dexterity to straighten my hair, so it's usually out of control. Minimal makeup only happens on good days, and my clothes are chosen for comfort instead of looks. Instead of nice work clothes, you will probably see me in yoga pants and a t-shirt.

I am the person who once had lofty goals and ambitions. I was going to take on the world and make my mark on it. I was going to do amazing things and go amazing places. Now I am the person whose goals focus around my health. If I can exercise this week, than I've met my goal. If I am feeling well enough to make all my commitments, then I've met my goal. If I can help one person through a blog post that I've written, I've met my goal. I look at small things instead of big ones because the big things are beyond my reach.

I am the person who used to be smart. I had good grades in school and I went to a good college. I wrote thoughtful papers that my professors loved. Now I am the person who can't remember words. Words that I have known my entire life have suddenly slipped from my grasp, and I find I can't finish sentences anymore. I lose track of conversations right in the middle of them. I can't remember things even when I've been told several times. I look like an idiot.

I am the person who once had a spotless and completely organized house. I loved organization and cleanliness. Now I am the person who has had to let go of perfection because I don't have the energy anymore. I'm able to clean enough that the house is usually presentable (the visible to the public parts anyway) but that is it. I'm constantly running behind and I feel like I can never catch up.

I am the person who didn't used to write for enrichment because I was too busy. Now I am the person who wakes up in the middle of the night with ideas for a blog post. Now I am the person who loves to read the inspired words of others about illness. Now I am the person who enjoys talking to other people with my experiences.

I am the person who once didn't have a lot of compassion for other people suffering. I thought people with chronic illness just needed to try harder. I didn't consider other people's pain. Now I am the person who thinks about others more often. Now I am the person who understands when someone is struggling. Now I am a person who is willing to listen and to love. Now I am the person who has compassion.

Monday, October 5, 2015

Why I will never have a normal life

A simple mix up at the doctors office has affected my whole week. I was at the doctors office a few weeks ago and they forgot to refill my prescription. I realized it as I was leaving, so they told me just to have the pharmacy fax in the refill. The pharmacy did so, and the doctors office denied the refill. I have now spent the last 7 days without any of the medication that allows me to sleep. Ergo, I have spent the last seven days without sleep. Every day I call the doctors office, every day they fail to fill the prescription. I  spend my day calling and calling and trying to get heartless employees to help me.

Yes, my doctors office is staffed by incompetent morons, but the reality is that this situation is not unusual. It happens to everyone who needs a medication just to survive. Which is why despite the fact that I am somewhat physically functional, I will never live a normal life. I need medication in order to sleep and I will need it for the rest of my life. Which means that my life is always going to be in the hands of someone else. Whether it's a doctor, an office staffer, a pharmacist, or an insurance company. They all have power over me. I can dream about living a normal life, getting a job, having a social life, sleeping when I'm tired, but I can never count on it because I never know when the medicine that keeps me functional is going to disappear.

I rarely cry about being sick. I rarely cry about anything, but this realization had me in tears. I hate the someone else has so much control over me. I hate that I can't sleep unless the useless idiots from my doctors office decide to come through. I hate that there is no recourse for me. I hate that there isn't another doctor with a competent staff for me to go to. I hate that I can't ever be normal.

Related Posts Plugin for WordPress, Blogger...