Update: I’m Dead Inside (Literally)

Some of you may have noticed I haven’t written anything in quite a while. This past year has been one of the worst of my life. Even more has been added to the list of things I cannot do and so I have been going through the stages of grief as a result (but had an extended stay on the depression part.)

A New Diagnosis

By September 2017, my ankle had been really really hurting for the past 3 years, but my doctors kept writing it off. “It’s just EDS pain,” they insisted, writing me off again and again. Yes, EDS led to my ankles usually being sore but not nearly as painful so I knew something was wrong. After insisting it was different than EDS pain and asking for my rheumatologist to look into it for three years straight I finally had an X-ray.

That X-Ray led to an MRI and that MRI led to a surgeon. In August I was diagnosed with Avascular Necrosis (AVN) in my ankle. AVN is essentially when the bone dies because it doesn’t get enough oxygen from the blood. In some cases the bone fully collapses, my ankle being one of those lucky cases. I had been walking around on a collapsed bone in my ankle for THREE YEARS.

As if that wasn’t enough to deal with, I was diagnosed with AVN in seven other joints (so far.) I have AVN in one shoulder, both hips, both knees, both ankles, and in my toes. My ankle AVN was by far the most severe as my talus (bone in ankle) had already collapsed. However, collapse in my hips is inevitable and I will likely need a few more joint replacements.

So I finally had an answer to why my pain had gotten so much worse over the past couple years, but it definitely wasn’t an answer I wanted. AVN is incredibly rare and there aren’t many treatment options. Many are very new or even experimental. When bones are in the early stages there are surgical options to put off joint replacements, but when it is very advanced joint replacement is the only treatment. Unfortunately, the only proven treatment for AVN is surgery.

Surgery

So in November 2017, I had my ankle replaced and fused. In addition, a procedure was done on my hip that was supposed to put off collapse. I think that hip procedure failed as my hip is far worse off now, but the ankle replacement is going well.

I’ll write its own piece on my ankle replacement as well as hip surgery. The science behind it is amazing and there’s a lot to say. Even though my ankle is recovering well, I’ve been really struggling with the grief and isolation that comes with a major surgery like this.

Limitations & Coping

I can no longer point or flex my foot and never will be able to. It’s hard to not think of the list of things I can’t do; it feels like it’s getting longer by the day. I haven’t been able to dance in a couple years, but I always thought of it as a possibility. Now I’m not sure it is. I can’t drive and will have to relearn to eventually once I’m healed. Hiking also seems unlikely. I’m actually okay with the never being able to wear heels again part.

I’ve coped with my EDS and POTS, but this is a whole different story. AVN has the potential to spread anywhere. Every joint pain I have worries me that I have AVN in another joint. Sometimes I can feel or even hear my joints crumbling or bone grinding on bone. I feel like I’m dying on the inside and it’s one of the most unnerving conditions I’ve had. It’s beyond depressing to know your body is degenerating and feeling it happen doesn’t help.

I’ve also had trouble coping with isolation. I rarely leave my house for something other than a doctors appointment due to pain. I moved to a place without stairs and that has helped. I also plan to dedicate a whole article to chronic pain and isolation in the future.

So there’s my very quick update. So many other things have happened that I will be writing about more in the future. For example, getting more diagnoses, finally getting IV hydration, PICC lines, a CBD product review, and more. Thanks for sticking around during my writing slump!

To The Park Ranger Who Questioned My Disability

I love camping. It one of my favorite things to do and I wasn’t about to let my stupid flesh prison keep me from doing it. So I organized a camping trip with 6 friends.

We went to Saddlehorn Campground, just a little bit out from Grandjunction, CO. I chose it because it had cemented paths and disability spots. It was absolutely beautiful as well.

We got there Friday late afternoon. Within 5 minutes getting there a man rode up on his bike.

“Why are you parked in a disability spot,” he accusatorily asked me (my official placard hanging in the window).

In immense pain from the 4-hour drive, I responded: “because I’m f**king disabled.”

He stood around and dumbly added, “but I’ve seen all y’all walking around.”

At this point I wasn’t alone in my anger, my friends chimed in. “Go away” “mind your own business” they yelled while I yelled, “just because I can walk tiny distances doesn’t mean I’m not disabled!”

He angrily, and obviously not convinced, jumped on his bike and rode off. I tried to not let it bother me, but it did. I was already gnawing at me when the park ranger came to our campsite.

“I need to see whatever proves you are disabled.” Obviously, my new friend had tattled on me. While she was saying this my disability placard hung visibly from the rearview mirror of the car.

My partner stood up and ushered her to look at the placard- literally right beside her. She walked away huffily as well. No apology for her hugely inappropriate behavior. Nothing.

I chose Saddlehorn for its disability friendly campsites and was harassed instead of finally easily able to enjoy camping. However, apparently, you have to be visibly disabled to not be harassed by other campers and staff.

Newsflash Saddlehorn: not all disabilities are visible. Not everyone who needs those spaces uses a wheelchair 100% of the time. Disability placards exist and aren’t easy to get without an actual condition that you need it for!

Playing Pokemon Go as Someone With a Physical Disability

Pokemon Go is a new game that came out this past week and has already become a sensation with 15 million downloads already. The game encourages players to get out, get up, and get moving. The more a player walks around, the more gear they get, Pokemon they catch, the faster they level up, and the faster their “eggs” (containing rarer Pokemon and gear) hatch.

 

I didn’t play Pokemon as a kid, but I downloaded the game when my friends started raving about it. I quickly realized there would be problems once I began to play: it was designed for people without physical disabilities.

The first night I played the game I limped to the park with my friends to catch Pokemon. Due to postural orthostatic tachycardia syndrome (POTS), one of the conditions I have, I had trouble catching Pokemon. At least for a beginner, the game required standing still in place to catch Pokèmon. I can’t stand still for long or else I faint, but sitting down and standing up over and over again wasn’t an option either. I quickly began feeling badly as my friends bounced around easily succeeding at the game.

The second day I played Pokemon Go I ran into another problem: the game requires a lot of walking. I have Ehlers-Danlos syndrome (EDS), so walking a lot often means popping out or dislocating joints or walking on recently dislocated joints. The game is fun for sure, but little is worth that level of pain. I began to play a lot less while my friends went on multiple walks a day and left me behind in the game.

Wanting to play and frustrated by falling behind, I tried using my wheelchair. I thought surely it will fix both my problems (standing and walking). However, playing in a wheelchair offered its own struggles. I couldn’t wheel and catch Pokemon or go to PokeStops the way my friends who could walk did so. I also couldn’t get to all the things I needed to in grassy areas or up steps. My friends offered to take my phone to these areas, but I wanted to play, not watch them play for me.

It makes sense why they released the game in the summer, but it has raised another problem for people like me. I cannot play most of the hours others can. Even in a wheelchair, I cannot go outside in the summer heat without fainting or severe symptoms, so I have to wait until dark when it cools off to play. When everyone around me is playing, at least during their lunch break, it just leaves me even farther behind.

I haven’t stopped playing Pokèmon Go and will probably continue to play. It is an enjoyable game and is doing great things for the average person who needs more exercise. However, the game definitely feels like it was made without people with physical disabilities in mind. Being left behind by my friends in the game is frustrating and will continue being so because the playing field is not even close to level. No matter how great I am at catching Pokemon, I can never catch up. It is so frustrating to always be behind for reasons I can’t control.

One of the worst parts is the able-bodied people attempting to tell me I should be able to play with no problems. Many convince themselves the game is fair and that a wheelchair or physical disability should not change game-play.

People with physical disabilities are telling a different story. People are feeling left behind, no matter the extent of their limitations. I hope the developers of the game listen to those of us who are actually affected and make changes so the game is fairer and more accessible to us all.

Also found on The Mighty.

#StopPOTS & Feel Free To Share

 

8 Things Healthy People Need To Stop Saying

Dear Healthy People,

There are a lot of articles out there about what you should stop saying to sick people. Here are some things healthy people need to think about before they say because they are hurtful. Please stop saying and doing the following. You are being insensitive and ignorant.

I try so hard to be empathetic and tactful, but I am so sick of these people not even attempting to be tactful or empathetic to me in any way so, this time, the gloves are coming off. I’m sick of your crap and am calling you out.

1. Sorry But I ___________________

• Was in pain
• Was sick
• Hadn’t slept well

Using pain, illness, or lack of sleep as an excuse for bad behavior is incredibly irritating.

I recently had someone go off on me in anger and blamed it on not sleeping well… for two nights. At the time, I had slept an average of 1 hour a night for the last 30 days. It was insulting for someone to treat me poorly and use not sleeping well for two nights as an excuse for their behavior when even after a month without sleep I was still nice to her.

When you have a chronic illness you don’t get to use pain, illness, or lack of sleep as an excuse to be rude to people. If you did you would lose every person in your life within a week. I realize that being sick or sleep deprived for many people is an uncommon and terrible thing to deal with. But it feels so terrible that healthy people get to use it as an excuse when I strive to be a good, nice person despite dealing with dislocated joints, not sleeping for weeks at a time, and all the crap that comes along with having a chronic illness.

2. I Know How You Feel
When healthy people say this to me I seriously want to scream. First of all, being sick for a long time is nothing like having an injury, being acutely sick, or not sleeping well a few nights. Pretending it is the same minimizes the biggest struggle of my life, a struggle that is hard to clear my mind of for a single minute because my pain is there to remind me constantly. Unless you have had to grieve for the loss of your old life when you were healthy you should not say this to someone with a chronic illness.

Secondly, comparing someone’s illness to your situation is messed up. Why do you have to make the comparisons? Why can’t you empathize instead of minimizing my problems? Plus, let’s be honest. If you want to play the comparison game you will lose. You haven’t slept well for a few days? Try months. Your shoulder is sore? Try dislocating multiple joints a week. You have had an ear infection for a week? Try having a sinus infection for 6 months or a debilitating illness for almost 8 years.

I can feel sympathetic to your pain and illness, but if you compare it to mine or minimize my illness my ability to empathize with you will go out the window.

Parents, you not sleeping because you have a child is not the same thing as dealing with a chronic illness. You chose to have children. I didn’t choose this. Being tired is not the same as feeling the crushing fatigue of a chronic illness. So no, you can know tired and not have an infant. Stop minimizing everyone else’s experiences because you have a kid.

3. I Have Been Sick For SO Long
Being sick sucks. Being sick for a while really sucks. I get it; I really do. This is not an “other people have it worse thing,” you are allowed to have a hard time. I can support you through that. It is a problem when you say these things to me or other chronically ill people without considering how I feel. Hearing you say that having a cold for a couple weeks as “so long” feels like you are ignoring the fact that that happened to me once, but the difference is my illness never went away.

I have been sick for 7 years, 8 months, and 6 days. I have not gone more than 3 or 4 hours (awake) that entire time without my body reminding me that I am sick, that I am not normal. When you forget that, when you ignore that, it is a slap in the face.

I will support you for the entire time you are sick but please do not forget the hard things I am dealing with. Don’t minimize what I am going through because you are having a hard time and I will not do the same.

4. You Are Lucky
You are lucky you get to take “fun drugs.”
I have excruciating pain nearly every minute of every day. The medicines I take are not to get high or have fun. They hardly take the edge off. I would never take them again if I could survive the pain. Being in so much pain you have to take medicine is absolutely not lucky.

You are lucky you don’t have to work/ go to school.
I was on track to go to medical school when I got sick. I am not lazy or avoiding work. I would give anything to be able to go to school and work. I hate feeling trapped into doing less. It isn’t luck; this isn’t a vacation.

You are lucky you can sleep in.
If I don’t sleep more I can function even less than usual. I am not sleeping in because I feel like it, am lazy, or am a bit tired. I sleep in because I cannot stand if I sleep less than 9 hours. My pain is unimaginable if I don’t get enough sleep. I sleep out of necessity, not pleasure.

The list goes on and on. How inconsiderate are you that you can’t see that having a chronic illness is not in any way lucky?

5. I Couldn’t Do It, I Hate _______

• Taking medicine
• Shots
• Going to the doctor
• Hospitals

I hate them all too, but when you have a severe chronic illness you no longer have a choice. When people say this I am not sure how to respond. Are you implying I do like these things? Do you think these things are optional? I have to do things I hate all the time to survive.

If you were chronically ill you would have to do all those things too. You do what you have to to survive. What you want, what you enjoy no longer matters when you are fighting every day to survive.

6. You Can Do Anything! Mind Over Matter!
I know you are trying to be inspirational but this is really insulting to disabled people. No matter what I do I will never be able to climb a mountain, become a surgeon, or run a marathon. Being literally unconscious puts a damper on accomplishing all your dreams. And that is what happens when I try “mind over matter”- I faint.

So no, don’t spew that crap to me. I am limited by my condition. Just because you are able bodied do not tell us we all of are able to accomplish anything we put our mind to.

7. I Never Get Sick
People say this with pride to me all the time. The only reason I am sick and you aren’t is chance alone. You are not better than me because you happen to be healthy.

When you say this with pride you make it obvious you think you are better than me because you are healthy. It makes it obvious you think I have control over the fact that I am sick.

8. At Least You Are Used To It
Discounting what I am going through because I go through it constantly is also insulting. My condition causes a different pain every day. It doesn’t get less shitty because I have had it for so long. In fact, it gets harder. It is exhausting and soul crushing to deal with pain and illness this long. So don’t dismiss me because I have had these problems for a while. It still hurts and it is still hard no matter how long it has been.

9 Common POTS Myths

There are a lot of common misconceptions about POTS. There are ones I get from doctors, nurses, family, friends, and even other POTS patients. Remember that most of our POTS symptoms are different and that the same thing doesn’t work for everyone!

1. POTS Is NOT Anxiety
I don’t care how much POTS looks like anxiety- it isn’t. The increased heart rate, palpitations, and shortness of breath in POTS are caused by the autonomic nervous system. Medicines for anxiety and medicines for POTS do not work the same and do not necessarily alleviate POTS symptoms.

Anxiety can happen as a result of POTS or alongside POTS but I cannot stress enough that they are not the same thing. Strange scary symptoms can make patients nervous and the life change of living with a chronic illness is enough to make anyone anxious, but the underlying condition is not caused by anxiety.

2. POTS Symptoms Disappear When You Lay Down
I have had multiple doctors ask why I don’t just lay down to fix my symptoms. Let’s get this straight- POTS symptoms are exacerbated by standing but do not disappear when I lay down.

Many people with POTS feel terrible laying down as well. Unfortunately, POTS symptoms can reach you at any angle. Just last week my tachycardia was 130 bpm while laying down and relaxing for four hours. The chest pain and brain fog did not go away the entire time. So while standing makes things worse, lying is not a magic cure-all for our symptoms.

I have talked to very few people who feel 100% better once horizontal but it is not the average POTS patient.

3. Exercise Will Cure POTS
Some people with POTS have had this experience and I am thrilled for them. However, for many of us exercise is not a cure-all. I hear on support groups POTS patients who have been helped with exercise be judgemental and condescending towards those who have not been helped. Additionally, friends and family can claim you aren’t trying hard enough if exercise does not cure you. Please stop people!

Exercise helps POTS but for people like me it is not a cure. I have tried swimming, biking, rowing, and walking daily for months at a time. Exercise helped my symptoms but my POTS is still severe and unrelenting.

Just because you are able to exercise does not mean you get to judge people who can’t (or are not having the same results. Associated conditions that happen together with POTS such as Ehler’s Danlos and neuropathy can make exercise extremely painful and difficult.

 

Trying to work out with EDS is a lot like this.

 

4. Most People Grows Out Of POTS
I was diagnosed with POTS at 18 and being between a teen and adult made things complicated. Pediatricians claim that many people who get POTS in their teens outgrow POTS; that doesn’t happen as often in adults.

Every doctor I saw that first year after my diagnosis told me I would grow out of POTS. It is 7 years later and my POTS is worse than ever. I understand doctors wanting to give their patients hope but that hope kept me from coping with a major life change. Instead of coming to terms with having a chronic illness I only thought of POTS as temporary.

This negative experience is not unique to me. A lot of people who are diagnosed with POTS in their teens will never grow out of it. A lot of this has to do with associated conditions; for example, people with Ehler’s Danlos rarely grow out of POTS. Telling all teens POTS is temporary, when many cases are not, is not helping them cope with their illness.

5. POTS Is No Big Deal
POTS can be an annoyance or it can be severely debilitating. This variance is part of why POTS is so hard to understand. Often people who have heard of POTS have a friend mildly affected and cannot understand more severe cases.

“Claire never cancelled this much on me and she has POTS too. You obviously are just making excuses again.”

 

Don’t be confused by people with less severe cases; POTS is often far more than an inconvenience. Experts are clear. POTS can be serious and hugely lower patient’s quality of life.

Somehow being too sick to go out makes me a flake and is grounds to yell at me. I did not choose this.

Comparisons in the diminished quality of life in POTS have been described as equal to congestive heart failure, chronic obstructive pulmonary disease, and end stage kidney failure patients on dialysis. Some people with POTS are absolutely bedridden and unable to care for themselves. About two-thirds of POTS patients cannot work full-time and 98% of POTS patients cannot socialize as much as they would like.

POTS can be a big deal.

6. POTS Has Nothing To Do With Pain
POTS is not commonly associated with pain, but often causes a lot of patients pain. Chest pain is exceptionally common with POTS and is sometimes severe (I have had POTS chest pain hurt as much as a pulmonary embolism). POTS is also associated with migraines, neuropathic pain, and joint pain.

Many conditions associated with POTS cause pain as well. Ehler’s Danlos causes an extraordinary amount of pain and autoimmune conditions may cause pain as well.

7. Lifestyle Changes Can Cure Everyone
There are some naive people who believe that no POTS is so severe that it needs medication. I recognize why lifestyle changes should be considered first. For many POTS cases more salt, water, and exercise are all that is needed to control symptoms. However, there are some people who still cannot function with these changes.

No matter how much I exercise, drink water, wear compression, tilt my bed, and eat salt I still faint without a beta blocker. I still do all those things but lifestyle changes alone aren’t always enough in so many cases.

8. Blood Pressure Changes Have To Be Involved For Diagnoses
The diagnostic criteria for POTS are about pulse, not blood pressure. While some changes in blood pressure may occur during a tilt table test or upon standing POTS is not the same as orthostatic hypotension. Hyperadrenergic POTS can affect blood pressure as well, but does not have to be present for diagnosis.

9. POTS is Not Rare
1-3 million Americans have POTS and about 1% of teens have POTS. It is more common than both ALS and Parkinson’s Disease, but awareness is a huge problem. As a result, it doesn’t seem like there are that many of us or that POTS is worth researching. Awareness will help fix this.

For how common POTS is there is some exceptionally bad information out there. As a result, people are getting the wrong ideas about POTS. Dealing with misconceptions constantly becomes frustrating. What misconception are you sick of correcting?

The Diagnosis Dilemma

POTS affects between 500,000 and 1,000,00 in the USA alone, according to Dysautonomia International, but isn’t very well known in the medical community. It is more common than Parkinson’s and Multiple Sclerosis- so why has no one heard of it? Some of this is due to that POTS was just recently given the name POTS in 1993. Lack of research and understanding is the largest problem. Research is finally starting to be done, but a lot more needs to happen. Often Veterinarian students will learn about Dysautonomia and medical students hardly gloss over it. A lot of POTS patients many different doctors before they diagnosed. Throughout this process we begin to lose support from your loved ones, support from the medical community, and are told our symptoms are all in my head.

My Experience

My personal experience with getting diagnosed with POTS was an incredibly lucky one. While working as a receptionist at a hotel I fainted after I had been standing for a few hours. They took me to the hospital to make sure I didn’t have another Pulmonary Embolism and (of course) didn’t figure out what the cause was. They sent me home with a referral for a cardiologist. The cardiologist was useless but did do one great thing: he sent me for a tilt table test.

My first tilt table test was ridiculous. When I told them I was going to faint they ignored me. My heart rate went from up over 60 beats per minute and I passed out. Afterwards, I asked them what that meant and they told me it was normal.

If I had listened to my cardiologist and the technician it would have taken much longer to get a diagnosis. Not everyone faints from POTS, but it was lucky I did because I was able to figure out what I had as a result. I googled “fainting after standing” as one of the hundreds of things I looked into. Between that and looking up “increase in heart rate upon standing” I was able to find that I had POTS. I found a new cardiologist, who wasn’t much better, who was able to definitively diagnose me with POTS. My hyperPOTS diagnosis took a bit longer, but that was a few years later at Mayo Clinic.

I did have trouble with getting diagnosed with my gallbladder problems and Pseudotumor cerebri getting diagnosed. Any rare or complicated condition has the potential for diagnosis these problems.

Just How Long Are We Talking?

To best understand what POTS patients go through in obtaining diagnosis we must look at the length of time and the number of doctors seen before diagnosis. Most POTS patients see 3-5 doctors, but there a few who have had to see 36 or more! That is about a day and a half of doctor’s appointments total; which means a day and a half of doctors telling you nothing is wrong and it is in your head. The amount of money for 36 doctors and a lot of testings is incredibly expensive! It is also emotionally draining.

Source: Data from the patient survey on POTS this wonderful website it doing here.

As for how many years it takes to get diagnosed, for the vast majority of POTS patients it takes over five years! For some patients, it takes as long as 20 years. Twenty years of medical tests, doctors visits, and feeling terrible with no answers.

Based on a Facebook poll of 76 POTS patients.

The Emotional Toll

Often when we first get sick people are very understanding and supportive. They want to help and there is a lot of sympathy. However, after months with no answers that sympathy and understanding goes away. Parents demand you clean and do chores, after all doctors found nothing wrong with you. Friends get upset when you have to cancel due to your symptoms. People stop asking how you are and that support turns quickly into judgement. It is one of the most alienating things I have ever been through.

If your loved ones not being supportive isn’t enough, the medical community begins to “shun” you. Doctors are terrible at saying “I don’t know”. Instead, they blame the patient and insist it is all in their heads. Here is a notable list of things doctors may say:

1. “It is just anxiety” Or insist it is depression, hypochondria, or another mental health condition.

2. “You are doing this yourself.” They assume it is Munchhausen’s or Munchhausen’s by proxy.

3. “You need to stop doing drugs.”

4. “You are making things up to get drugs.”

5. “You just need more exercise.” Or they tell you to be more active, go back to work, get out more.

6. “You are making up all this to get attention.” Oh ya, I love how much attention I get for POTS.Most of it is negative! I hate being that sick girl- who would want this?

7. “That is normal.” Fainting is normal? POTS symptoms aren’t normal and are a huge threat to the quality of life!

Feeling terrible and hearing these things is incredibly draining. After hearing it is all in your head you begin to wonder if they are telling the truth. Friends and faily may even agree with the doctors and begin to say hurtful things when all you need is their support.

How Do We Fix This?

Advocate and Educate! It can be incredibly frustrating to have to educate a doctor, but it is the only way things are going to get better. The more doctors know about POTS, the fewer people will have to endure misdiagnosis. Those of us with a diagnosis need to help those who haven’t yet.

Here is a pamphlet from Dysautonomia International on Dysautonomia to give to any doctor who needs to do some learning. This is a fact sheet on POTS. This is a POTS overview. Go forth and educate!

And Then She Told Me I Have Cancer

Having Cancer is News to Me

Last week I was diagnosed with cancer by an ultrasound technician before the test even began. I sat down and she sais, “so we are looking at the state of your thyroid cancer.” As far as I knew I was just having a thyroid nodule checked. I was nervous, but her comment terrified me. I confirmed with her that the order did say I had cancer. Did the doctors know something I don’t?

I then proceeded to ask the name of this doctor who said I had cancer. Somehow, the order was from a doctor I’ve never even seen. A doctor I hadn’t even been to yet said I had cancer. My primary doctor is the one who scheduled the test so I was very confused. Maybe this new doctor didn’t care enough to enter the correct code for the technician. I can’t even imagine what happened to make that mistake. As a result, my weekend was stressful. I had to wait four agonizing days before the doctor finally called me back.

At least for now, they have determined that the tumor doesn’t need immediate attention. I don’t understand because it has doubled in size in the past year. I also have mysterious thyroid blood test results. For some reason, I don’t feel relieved yet. Maybe it is taking a while to sink in because I was trying to get used to the idea that I do have cancer in case the ultrasound technician was correct.

I am confused and frustrated over this situation. Patients shouldn’t have to deal with a fake cancer diagnosis. Telling someone they have cancer should never come so lightly! And you definitely shouldn’t have to hear it from an ultrasound technician.

I try to be understanding of people just making mistakes. However, these sort of mistakes happen all the time to me. I’ve been misdiagnosed a few dozen times. In fact, this isn’t even my first time being told I have cancer. The first time I was told I had cancer was by a Gastroenterologist. He diagnosed me without even doing tests. As someone who struggled to get my diagnosis, I am usually all for getting diagnosed. But only is if it the correct one! Incorrect diagnoses are stressful and harmful to patients.

The first time I was misdiagnosed with cancer, I was referred me to an oncologist and they did many painful tests and put me through a lot of stress before determining I didn’t actually have cancer. For months, I thought I had cancer because my doctor didn’t care enough to get all the facts. That stress takes a toll on your mental state.

Too Many Rules

I also had bronchitis/pleurisy last week. I was coughing, hadn’t slept in three days, and was in terrible pain. It is now taking three weeks to get into a Pain Specialist for an appointment. So I called my doctor. She called me in an antibiotic and cough syrup with codeine to the pharmacy to help me sleep. I was excited to finally get sleep and feel a little better.

Cough syrup with codeine is monitored closely under the law. A hard copy of the prescription is required to refill it. So obviously the fax from my doctor didn’t work. I called my doctor at 4:30 PM and they were already closed! So just because of ridiculous rules and regulations I had four pain filled and sleepless nights in a row instead of just three miserable nights.

I understand that many of the rules and regulations in the medical system exist for a reason. However, people who are chronically ill have to deal with all the inconveniences created by rules daily. While I am sure that requiring hard copies may lessen narcotic abuse, but it makes it so difficult for chronically ill patients to get the medication they need. When these problems arise, doctor’s offices take hours if not days to get back to you. The rules and regulations may not stop, but how medical professionals can change to make their patient’s lives easier.

When problems do arise, doctor’s offices take hours, if not days, to get back to you. The rules and regulations may not stop, but medical professionals can change to make their patient’s lives easier.

We Need Change

The medical profession exists to help people. However, when things go wrong the medical system can ruin your day, week, or life. Even small mistakes, like the failure in communication between professionals I experienced, can really make the patient’s experience worse. Dealing with an illness is already a trying time and incorrect information can affect people’s quality of life. Shouldn’t medical professionals be working to make their patient’s quality of life?

It needs to be easier to contact doctors for questions; it needs to be easier to refill a prescription. There has to be a better way for medical professionals to communicate with each other.

Most importantly, we need to value medical professionals who do care about their patients. There is so much focus is on competition and learning in medical school that by the time those students are doctors, they have a hard time seeing them as humans. When intelligence, competition, and apathy are encouraged in medical students is it really any surprise that doctors don’t value their patient’s quality of life.

My largest complaint with the medical profession is that I am treated like a number. I have bounced around hundreds of doctors and am constantly bombarded with tests, but rarely does a doctor treat me like a human being. Treating patients like humans instead of numbers will solve many problems the medical system has. I know a doctor who cared about patients as people wouldn’t accidentally diagnose someone with cancer.

9 Ways to Be Supportive When You Don’t Understand

There are many experiences common to every human. Most of us will go through these, so we can easily relate and empathize. Nearly everyone is affected by the common cold. Therefore, when someone says they have a cold it is easier be understanding and supportive.  Memories of soup, towers of tissues, and feeling miserable immediately come to mind. We know how to support and help each other through a cold because we can remember what we needed. But what happens when you have no idea what a loved one is going through? How do you support them?

1. Realize you don’t have to understand to lend support. As humans we all go through hard times. Two friends I used to babysit, Julia and Evan, were young friends who both supported each other through an incredibly trying year. Julia and Evan show that humans, including children, don’t have to go through the same experiences to support each other. For Julia, the worst experience of her young life has been the loss of her mother. For Evan, the death of his beloved dog has been the most difficult time of his life thus far. So how did Evan support, empathize, or even begin to understand Julia? It is obvious that they couldn’t entirely relate to each other’s experience. However, this doesn’t mean that they can’t support each other. Both children went through an experience that was incredibly difficult for them. While Julia’s mother’s death had a more profound effect on her life, both children felt sincere grief. Sorrow and struggle are real and in the moment. The cause of grief didn’t change the despair either child felt. Because both children went through those hard experiences and felt grief, they can better relate to each other. Even though the causes and degrees of these feelings were different, both Julia and Evan supported each other through their grief.

As humans we all go through hard times. Two friends I used to babysit, Julia and Evan, were young friends who both supported each other through an incredibly trying year. Julia and Evan show that humans, including children, don’t have to go through the same experiences to support each other. For Julia, the worst experience of her young life has been the loss of her mother. For Evan, the death of his beloved dog has been the most difficult time of his life thus far. So how did Evan support, empathize, or even begin to understand Julia? It is obvious that they couldn’t entirely relate to each other’s experience. However, this doesn’t mean that they can’t support each other. Both children went through an experience that was incredibly difficult for them. While Julia’s mother’s death had a more profound effect on her life, both children felt sincere grief. Sorrow and struggle are real and in the moment. The cause of grief didn’t change the despair either child felt. Because both children went through those hard experiences and felt grief, they can better relate to each other. Even though the causes and degrees of these feelings were different, both Julia and Evan supported each other through their grief.

2. Don’t compare experiences, but do relate to feelings. Whatever your loved one is going through, you have at least some experience you can look at and relate it to. We have all felt frustration, despair, hatred, and pain. For example, if you want to relate to someone who is chronically ill look at what you felt when you were sick. You likely felt pain and frustration, just to a different degree. Therefore, you have the tools you need to empathize with them. Just think, how would those feelings change when sick much longer? What else would you feel? What would you need in terms of support?

While searching for common feelings remember to never compare experiences. You would never say to someone who just lost their mom “I understand what you’re going through because I lost my family dog last year.” Instead, you want to consider what feelings that loss stirred in you and what support you may have wanted from others. Then you can adjust your actions accordingly and support them successfully.

While searching for common feelings remember to never compare experiences. You would never say to someone who just lost their mom “I understand what you’re going through because I lost my family dog last year.” Instead, you want to consider what feelings that loss stirred in you and what support you may have wanted from others. Then you can adjust your actions accordingly and support them successfully.

3. Seek to understand and learn. When your related feelings and experiences just aren’t enough to understand what someone is going through, seek understanding elsewhere. Even if your loved one may not want to walk in detail about what they are going through, the internet is a great resource to find people who will give you insight. You can just look up ”

When your related feelings and experiences just aren’t enough to understand what someone is going through, seek understanding elsewhere. Even if your loved one may not want to walk in detail about what they are going through, the internet is a great resource to find people who will give you insight. You can just look up “what it is like to lose a parent” or “what it is like to live with a chronic illness“. Reading these will help you to understand what your loved one is going through. If you still have questions, approaching your loved one and saying “I don’t understand what you are going through but I want to support you” can be enough! This gives your loved one an opportunity to explain what they are going through or, if they do not wish to talk, they will at least know you really care and feel your support.

4. Never judge. The fastest way to make someone feel unsupported is to judge them. Never judge how someone deals with something you have never dealt with. Even if you have dealt with it, avoiding being judgmental is a great practice. For example, you should not say “it has been six months, shouldn’t you be getting back to normal?” Instead offer support and say, “I know these past six months have been hard on you; is there anything you would like to talk about?” Try to understand and support first, judge later (or never).

5. Offer more than your prayers. Prayer is the most common support offered to loved ones going through a hard time. Letting someone know you are thinking about them is great, but what are you really doing for them? Even if you believe in the power of prayer, you telling them you are praying does little for them as far as feeling supported. Letting them know that you are there to listen, cooking them a meal, or cleaning their place is much better. If you want to let someone know you are there for them, do something! Actions speak louder than words. These helping actions will lead to your loved one feeling much more supported than they would with a prayer.

6. Reach out. Don’t assume they will ask for support. Asking for help is not my strong suit. Asking for help isn’t easy for a lot of people. When people are going through a hard time it may be even more difficult. Vague offers for help with “anything you need” begin to feel empty and contrived. So if you really want to help and support someone ask, specifically, what you can do. Reach out to them whenever you think of them or wonder if they need anything. Even if they don’t need help, they will feel much more supported.

7. Suggest specific ways in which you may help. Suggesting specific ways in which you may help will make your loved one feel even more supported. Even if you aren’t aware of exactly what they need, offering concrete ways in which you want to help shows your support. Suggesting tasks also gives your loved one an idea of what you are willing to do and gives them an idea of what they can ask for comfortably. When I need help I ask people who have offered some specific help in the past. I assume people who say “if you ever need anything just call,” are simply being polite.

8. Listen and empathize; hold the advice. If you have no idea about what going through a situation entails, please don’t give advice on it. I can’t tell you how many people have given me unwarranted medical advice because I have a chronic illness. It isn’t being supportive. When you give advice on something you know nothing about you minimize what your loved one is going through. I have spent the past six years bouncing around the medical system, confusing doctors. My complicated medical problems are not going to be resolved by an ignorant jerk with no medical background who is convinced I just need to cut out gluten.

This of course only applies when you aren’t asked for advice. If you have been asked, give your advice with as little judgment as possible.

9. Don’t pull away just because you don’t understand. Just because it is hard to be there and support someone through a hard time doesn’t mean you should give up. Even without similar experiences you can enrich their lives through supporting them through this hard time. Seek understanding even if it isn’t the easiest thing. They need your support especially now. Even if someone doesn’t ask explicitly for your help and support, they may really need it.

It is possible to support someone through something you don’t understand. Ask questions and try to understand what they are going through the best way you can. Offer specific suggestions for how to help them, and don’t offer unwarranted advice. Just listen and love. Good luck!

Cake is Infuriating: Chronic Pain in the Movies

For those of you who don’t know what I’m talking about, Cake is a movie with a Jennifer Anniston about a woman in chronic pain. When my partner first downloaded the film I was really excited to watch it. Chronic pain is a real struggle for so many people. Our story will finally be told!

I got my hopes up, but Cake was absolutely infuriating. They had such a great opportunity to share our story and fell entirely short. Not only is Cake a terrible representation of what it is like to live with chronic pain, the film seems to go out of its way to make us look bad. This is a common issue. People with chronic pain are commonly treated like criminals for being in pain. Our entire struggle is diminished as “drug seeking” and society basically shames us for the pain we have no control over. Cake is making these misconceptions worse.

Chronic pain does not equal addiction!

Claire, the main character of the film, falls short in so many ways. Claire is an abrasive addict. She is obviously addicted to opiates. She likely is actually in severe pain, but she is not responding in a healthy manner. There are people who take opiates for chronic pain and get help the correct way. Claire does not. She lies to her doctor to get medication. She drives to Mexico to get medication. She steals from her dead acquaintance to get medication. She drinks in excess while on medication. She takes an incorrect dose of her medication. She even overdoses as a response to stress!

For these reasons, Claire is an ideal character to represent addiction. The problem is that, for many, she represents someone with chronic pain. She fails us.

Pain isn’t Passing

In Cake, Claire’s pain begins as a part of a car accident in which she lost her son. Claire is in physical rehabilitation to make improvements over her condition. We are shown an aqua therapy session in which Claire gives up quickly due to pain and the therapist complains about her lack of improvement. Eventually, when Claire begins to try harder; things begin to magically go her way. This upsets me greatly. The most frustrating misunderstandings people with chronic pain endure are perpetuated by this horrible movie.

For example, chronic pain is not on a timer. Chronic pain isn’t usually pain from an accident that should continue to improve in time. For a lot of us our problems will get worse with age or stay the same. That “you aren’t better yet?” mentality is so frustrating! Explaining that this is the state of your health and it isn’t going away anytime soon is incredibly taxing.

Hard Work… Impossible Work

You just need to “work harder and you will be better!” This mentality, encouraged by Cake, is also harming those of us with chronic pain. In my condition, (Ehler’s Danlos III) hard work and physical therapy are often required to heal from injuries. However, no amount of determination or hard work is ever going to magically fix the collagen in my joints. I will continue to have problems. My control over my recovery is limited by my underlying condition. Just like many other chronic pain sufferers.

At one point in the movie Claire decides she is done with drugs. She even dramatically tears out her IV. I seriously can’t roll my eyes at this enough. In Cake, Claire’s determination was enough to stop the meds and deal with her pain drug-free! This is far from reality.

For me, pain meds are the last thing I try. If I am on pain medication for an extended time it is because I would not be able to function, survive, and/or live in the amount of pain I am in off of medication. There are too many side effects for me to be on them unless it’s a necessity. Opiates aren’t some nice crutch you start and stop on a whim!

You would never praise a diabetic for suddenly forgoing insulin. If Claire needed the amount of opiates she was consuming, suddenly stopping is unrealistic. Stopping opiates suddenly after an extended amount of time is simply a bad idea. That should have been a decision she made with her doctor. Cake continues this belief that opiates are only for those who aren’t mentally strong enough to handle pain. Taking medication for severe chronic pain is not a sign of weakness. Stop stigmatizing treatment for chronic pain!

Chronic Pain and Suicide

The single thing that I appreciated was that Cake approached topics of depression and suicide ideation. Physical pain can have a huge impact on mental health. It is under-addressed that a lot of people in chronic, severe pain think about suicide and self-harm. It is actually quite natural for these thoughts to come up in chronic pain patients.

What about it wouldn’t be natural? If you were in pain constantly would you too not wonder about escape? Patients who feel this way should be offered support and therapy; under no circumstances should someone in severe long-term pain be shamed. Whether patients disclose depression, suicide ideation, worries of dependency, or ask for a pain medicine there is no reason they should ever be treated as a criminal. Any open and honest communication should be encouraged.

If the pain is severe enough that suicidal thoughts are occurring then coping mechanisms need to be enhanced. Often chronic pain patients do not ask for help with these coping strategies despite medical professionals being equipped to help. Both the act of admitting depression or suicidal thoughts as well as requesting additional pain relief are extremely stigmatized. Therefore, patients aren’t talking to their doctor and getting the help they need before suicide becomes the only viable option left. This is a topic that needs to be talked about more and I appreciate Cake addressing it. Addressing depression and suicide ideation really is the only thing that movie did correctly!

I also believe that it is necessary for patients to be able to be honest about worries of dependency, tolerance, and addiction to opiates. By criminalizing opiate addiction, we have made it so that these patients, like Claire, cannot get the help they need. If Claire wasn’t worried about being judged or treated like a criminal she may have been able to get the treatment she needed for her opiate addiction.

Cake is Just Wrong

This movie genuinely had me in tears, and definitely not because it was a truly moving. So many people who were in my life have treated me like I’m Claire. They treated me like a drug addict for being in pain. This is how a big part of the world sees us. It already is terrible to be in pain every waking moment. Those around you seeing you in pain and still treating you like a drug addict due to the stigma behind opiates is even worse. I know for a fact that a portion of my family would rather see me screaming, crying, and writhing on the floor in pain rather than have me take opiates. For me, that is the most heartbreaking part.

So to Cake with all its misconceptions: Not all of us are in pain due to an accident. Not all of us are in pain because we aren’t working hard enough at rehabilitation. Not all of us will get any better. Some of us will get worse. It will not be because we weren’t trying hard enough.

We are nothing like Claire. We want to get better. We want it more than anything. We hate taking the drugs. We avoid them when we can. We don’t lie or manipulate doctors. We are not weak because we take medication. We are strong from the pain we have fought all these years.

Most importantly, we are in pain and every day is a battle. So give us your support, not your judgement.