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!

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.

The Big Problem With Overdose We Are Forgetting

 

Everyone is freaking out about opiate overdose- what about the major problem no one is talking about?

Prescription overdose has been in the spotlight lately, which makes sense. Drug overdoses have now surpassed automobile overdoses as the leading cause of accidental death. What doesn’t make sense is that because of this spotlight chronic pain patients are running into a harder time getting the help they need. Instead of addressing drug abuse and overdoses in a productive manner people are punishing chronic pain patients who need help by making it harder to get their medication.

This study reveals that chronic pain patients aren’t the ones who are having problems with abuse; Only 2% of chronic pain patients end up having problems with abuse. However, if people make conclusions based on the media, all chronic pain patients are addicts destined to accidentally overdose.

Overdose is heavily talked about, but there is one extremely important aspect to this that everyone is missing- suicide. Dealing with pain every second of every day can, unsurprisingly, be incredibly depressing. In fact, 19-28% of people with chronic pain are suicidal on some level, whether through suicide ideation or with actual plans to carry out their death. And the most common tool for suicide in these cases? You may have guessed it- medication overdose.

We need to change how we perceive health and chronic pain for this problem to go away. Two major risk factors in chronic pain patients who commit suicide are patients feeling like a burden and not feeling like they belong. This comes as no surprise to me. Our society absolutely treats people who are disabled like burdens and outsiders.

We praise the people who are friends with/ dating/ supporting chronic pain patients because we see chronic pain patients as burdens instead of people.

We abuse chronic illness patients at a rate that is 1.5 times the usual or 4 times as much if the chronic illness is mental, only to act like they are lucky to have anyone in their lives.

We do the bare minimum to make things accessible (only because it is the law) and act like we are doing disabled a favor.

We treat people with chronic pain first as criminal drug-seekers and consider their pain and quality of life second.

We talk about how terrible opiates are and how they are never justified. There is no understanding that for many of us the choice is between this unfortunate drug and killing ourselves because the pain is too much to live with every day.

We often go out of our way to avoid the disabled. We look away or make an excuse.

Overdose is a huge issue and it should be taken seriously. However, going after people who are already hurting is only going to worsen this issue and cause an increase of overdoses. Researchers already don’t feel like they can properly tell which opiate overdoses are accidental or suicide. Statistics suggest that we should at least consider that suicide is a big issue in the discussion on overdose.

Part of the solution is to change the way we think about and treat chronic pain patients. 

Another part of the solution is to change the way we think about and treat chronic pain patients. The other is to make naloxone, a medicine that can save people from  an overdose, easily available to people who do overdose accidentally.

Decriminalising these drugs would also help drug abusers get the help they need without fear of being charged with a crime. 

When we talk about overdoses we often leave out discussions of the people who are using these drugs the most. We also need to make the increase in suicide, abuse, depression, anxiety, and PTSD in chronic pain patients part of the conversation on increased overdose. 

 

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.

youdontknowtired.jpg

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.

Defining Yourself By Your Disability and Seeing Yourself As Sick

Defining Yourself As Your Disability

 This article makes a really good point I have  been thinking of lately. People should not demand someone with a disability to look at themselves in whatever way you see fit. Don’t complain that they talk about their illness too much. My disability does not define me, but it has shaped who I am. I have to deal with it every single day; it is a part of my life and I will talk about it if I want to.

Firstly, telling people to not “define themselves by their disability” is insulting because it implies that is how they do define themselves. For me and for most people this isn’t true.

Secondly, telling someone to not define themselves by their disability or to talk about their disability less is just ignorant. The people you see every day, the job you go to every single day- those things shape who you are. So who are you to say that a something I deal with every minute of every day should not influence my life or how I see myself?  When you hate your job you are probably going to talk about it a lot. In no way does that mean you are defined by that feeling, your crappy job, or how you deal with it. Talking about something that affects you so profoundly absolutely does not mean you are “defined” by it.

Seeing Yourself As Sick

While at the Dysautonomia International Conference a Dr. Paola Sandroni, a neurologist and expert in POTS, claimed that IV fluids should not be given to patients because it makes them think of themselves as sick*. Well, my question to Dr. Sandroni: how is wanting IV fluids to feel less sick going to make me suddenly see myself as more sick?! IV fluids make me feel less sick and more normal. Do you want to know what does make me think of myself as sick? Fainting. Pain. Brain fog. Dizziness. Nausea. Severe tachycardia. Vomiting. Chest pain. Our symptoms make us feel sick and think of ourselves as sick; treatments make us feel better and more normal. Stop demonizing our attempts to feel better.

I have also heard “friends,” family, and medical professionals go even as far as saying that you would feel better if you didn’t focus so much on being sick. Just stop talking about it and it will go away. In some cases, I am sure this is true, especially with patients who have both anxiety and POTS. Most of us do not. Just as many others, I don’t see myself as weak and sick. That is not why I talk about my illness. In fact, I see myself as strong, and a fighter for what I go through every day and keep on going. I recognize how hard it was to ask my friends and family for support. I recognize that I am doing everything I can to raise awareness to hopefully limit both the suffering of others and myself. If I need support to deal with this really tough thing then you can bet I will talk about it, and I’m stronger for that fact. You can’t silence me by demonizing the way I get support and deal with my illness.

awesomedealwithit
*All the other doctors at the Dysautonomia International Conference were wonderful and much more understanding of patient’s struggles. This was just one negative experience of an overall wonderful weekend.

Dating With A Chronic Illness: The 7 People You Will Meet

Dating with a chronic illness can complicate things. Here are the 7 types of people I’ve run into:

1. The One Who Ignores Your Illness

A lot of people have no idea how to interact with someone with a disability. While some people may attack the issues you face head on, these people avoid the topic at all costs. They rarely ask you how you are feeling, avoid topics of doctor’s appointments, and generally clam up when the topic turns to anything health related.

In my experience, these people do actually care if you are okay, but really don’t know how to go about talking about it. Unfortunately, not discussing a huge struggle in your life with your partner just doesn’t work. Education leads to understanding. If someone isn’t willing to talk about your illness it will be more difficult for them to understand problems that pop up. They lack the knowledge to understand why their sick partner had to cancel at the last minute, why they can’t eat the chocolates they gave them, or why those surprise concert tickets pose a problem.

MRW my friend tells me he proposed to the girl he's been dating for three weeks... - Imgur

2. The One Who Pities You

I love it when a partner rubs my head when I have a migraine, or is sympathetic to my venting. This sympathy can cross over to pity which gets old fast. Having a chronic illness is definitely a struggle but I don’t want to be constantly reminded “how strong I am” or asked “how I don’t give up.”  I want to be an equal in my relationships, and being constantly babied takes away from that.

Sympathy - Imgur

3. The Overly Helpful One

Yes, someone can be overly helpful. These partners go above and beyond when trying to help you manage your illness. They even help you with things you don’t ask for, and for a while everything is much easier. The problem with the overly helpful partner is that they almost always burn out. They put helping you with your illness over their own needs. And when they burn out you are the one who gets burned. Not addressing their personal needs leads to them resenting the person they are trying to help.

These breakups are often very abrupt and sudden. One day they are driving you to the hospital and sitting up with you all night and the next day they leave you alone in the hospital to go to a party saying it is all too hard. All of a sudden all the things they did for you (that you never asked for) are all your fault and you aren’t thankful enough for everything they do. Finding someone who can be honest about their needs and not stretching themselves too thin is extremely important.

When i realize the girl I started dating has low self-esteem.  - Imgur

4. The Expert

Calling this partner the expert is wholly inaccurate and really just my way of ridiculing them. People with chronic illnesses will run into “experts” on their condition all the time. They suggest ridiculous things you have already been checked for or try to tell you about an illness you have had for years and understand very well. I’ve even dated people who get upset with me for not following their suggestions, “have you been checked for gluten sensitivity again yet?” They think the only reason you aren’t cured is because you haven’t had their ideas yet. These people also see not following their ridiculous suggestions as not trying hard enough.

MRW my parents start asking too many questions about what I'm doing these days... - Imgur

5. The One Who Can’t Stop Asking If You Are Better Yet

Sometimes you can explain your illness a hundred times, define chronic repeatedly, and do your best to educate your partner and they will just never get it.  They will say things like “oh, you’re still sick” or “wow you still aren’t feeling better” or “when you are healthy we can go out.” I have a chronic illness! Chronic means long term; I am always sick!  They just don’t get it no matter what you do.

MRW my teacher yells at me for calling a girl dude because it's condescending towards my whole gender - Imgur

6. The One Who Can’t Handle It

This is the most common person I run into while dating and I must say it has left me frustrated. Sometimes my chronic illness comes up naturally in conversation, and other times I have to modify plans and it will come up. It is perfectly common to never hear from them again after this. For a while I thought I was paranoid and that it has nothing to do with my illness or that people just thought I was being flaky. However, I have had a few people outright tell me they aren’t okay with dating someone with a chronic illness.

For example, on one online date, within fifteen minutes, I had my date say “But she had Crohn’s disease and I am sure as hell not going to put up with that bullshit.” I walked away. What an insensitive jerk.

Trying to find a boyfriend before Valentine's Day - Imgur

7. The One Who Supports You

I’ve found finding people who support you through your illness to be incredibly rare and even more so in dating. The best partners treat the chronic illness as something you are fighting together, not a negative personality trait that is your fault. Remember that you always deserve someone who supports you!

MRW I find a profile on a dating website that mentions imgur - Imgur

Update: Because I’m Special Like That

Like a lot of people with Ehler’s Danlos III, I have back problems and hip problems. In the past, I have received epidurals for the pain and the injections have been lifesavers.  This time my body decided to be uncooperative.

The first injection went fine, but as they began the second injection Cerebral Spinal Fluid began to leak. They stopped the procedure to make sure it would stop. It did so I went back into the operating room a second time. When I came to I could feel nothing from the waist down and couldn’t move anything from the waist down either. Now I am not talking about numbness or weakness. I had full on temporary paralysis. It was such a strange feeling!

2015-05-28 14.48.08

Looking awesome in my funny hat and gown.

My doctor wasn’t too worried and assured me it wouldn’t be permanent. She said out of he two thousand procedures she has done this has only happened once before. Because I am special like that.

Over the next few hours I began to regain feeling in my hips, legs, and finally toes. The saddest part of the whole experience is that when I could feel nothing from the waist down was the least pain I’ve been in for the past six years. It was a strange thing to enjoy (only because I knew it was temporary).

Now the recovery is extremely painful and slow. I can only help some of it helped. We will see.

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.

When you're really not okay but you don't want people to worry... - Imgur (1)

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.

I'm overwhelmed. - Imgur

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.

I feel overwhelmed with emotions and I don't know how to handle them. - Imgur

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.

MRW when my friend's GF starts saying bad things about me and my friend says You never talk to him like that or we're done - Imgur

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?

Today I got my first full paycheck. After more than a year of just barely getting by due to illness. - Imgur

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.

The power of prayer! - Imgur

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.

MRW my ex shows empathy. - Imgur

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.

When it comes to depression and chronic illness - Imgur

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!