4 Problems With The Pain Scale

My life has been filled with a lot of pain and many different types of pain. In the past 7 years, I have not had a single day without pain- not one. I have good days and bad days, but even the good days are filled with pain. Aside from the pain itself, the pain scale is one of the banes of my existence.

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1. It Doesn’t Work For Chronic Pain

Not only is it a pretty terrible scale for measuring pain in the average person, but it is even less effective for people with chronic pain.

I’ve had a lot of people when talking about pain, make the comment “but you’re used to it.” This isn’t exactly true. My pain is actually worse and more unbearable than it has ever been before. Pain doesn’t hurt any less because you are used to it. What you really get used to is living with it. You get used to pretending you don’t have pain, using coping methods such as distraction, and hiding the pain.

If I had the average response to dislocating a joint that the average person did I would be crying, distorting my face, and screaming far too often to navigate this world. So I’ve learned to breathe through it and even smile. Only people very close to me can even tell that something is happening- and often they can’t even tell. Developing this coping mechanism is so necessary for living with chronic pain and such a problem at the doctor’s office.

I have had at least a dozen kidney stones. The pain of a kidney stone is slightly worse than my average Ehler’s Danlos pain, but not enough that I can easily shed my coping mechanism of hiding my pain. One night I began to pee blood and couldn’t keep fluids down so I went to the ER. I told them I had a kidney stone- I know full well what they feel like by now. The nurse told me I couldn’t have a kidney stone, “Even giant footballer men roll into the fetal position from kidney stones.” They did a scan and, of course, I had a large kidney stone. I eventually got treatment, but first was told I wasn’t in enough pain. It was infuriating and it has happened more than once.

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It has gotten to the point where I almost feel like I have to try and visibly show the pain I feel inside, but it is still so difficult.

2. It Isn’t Standardized

Another problem is the scale means something different to everyone. I’ve been told 10/10 is the worst pain I’ve ever felt and also told that 10/10 is the worst pain I can imagine. These are far different measurements! For the same pain, I would rate it as a 8 on the first scale and a 3 on the second (I can imagine some horrific pain).

3. We Can Only Compare Pain- Not Imagine It

Generally, we can only rate our pain based on comparisons to other pain we have actually felt. That is the best way to understand someone’s pain. However, many people are at the extremes- they have either had a fairly pain free life or have experienced immense pain. Two people’s 7/10 may be wildly different. The scale does not work as a stand-alone tool without considering the pain patients have felt in the past.

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4. The Scale Is Used Against Patients

Another problem with the pain scale is that it is commonly used by nurses and doctors against the patient. If you answer too high on the pain scale and they can’t see the cause of your pain, they will assume you are lying to get drugs. If you answer an 8 and then check messages on your phone (even though distraction is one of the best solutions to pain) they will assume you are lying. If you answer too low they won’t take you seriously. Instead of using the scale to help treat patients it is often used to hurt patients.

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So if the pain scale is the problem what is the answer? Medical professionals need to listen to their patients when they describe their pain and take a look at their medical history. The pain scale needs to be taken with a grain of salt when used and needs to be standardized. Medical professionals need to make up their minds. What is a 10/10? Decide and then stick to it!

8 Ways Alternative Medicine Hurts Those of Us With Chronic Illnesses

Since the moment I first got sick the suggestions people gave me were unreal. The suggestions began with “just needing to pray harder” and gradually made their way to biofeedback, grounding, crystals, supplements, and more. I honestly am not sure which was worse, but I do know that suggestions and trying alternative medicine have only made a hard life with chronic illness harder.

1. The Patient Gets Blamed When a Treatment Doesn’t Work

When a doctor gives me a medication and it doesn’t work I don’t get blamed for the failure. However, when I try an alternate medicine I nearly always do get blamed for the failure. When it was biofeedback, I wasn’t trying hard enough or practicing enough. When it was acupuncture, I wasn’t trying to relax hard enough. Even with supplements, I just hadn’t waited long enough for the benefits (no matter how long I waited).

It is hard enough to be blamed for a treatment not working when you are trying your best. It is even worse when this attitude gets perpetuated beyond your treatment and into the rest of your life. Sometimes when I tell people the conditions I have I get the response “Well are you trying _____” (Insert any alternative medical treatment). Sometimes it is implied and sometimes it is explicit but the underlying question is always there- why aren’t you trying everything you can? The reality is that people with chronic illnesses don’t owe it to anyone to try treatments not verified by science. The attitude that we aren’t trying hard enough when we don’t try whatever alternative treatment is hurting people. It has kept me from getting the support I need from my friends and family- I was never trying hard enough to get better so in their eyes I didn’t deserve their support.

2. Alternative Medicine Is Dangerous

There are many reasons using treatments only verified by science is so important. One reason is safety of a treatment is verified. The treatments benefits must outway the risks for it to go to market. However, alternative medicine doesn’t need to go through the same thorough screening. People with pre-existing conditions can be the most endangered by this lack of safety.

For example, supplements often aren’t what they say they are. This can cause medications interactions and other problems- especially in people who already aren’t healthy. Chiropracty and acupuncture have their own dangers too. Chiropracty has been linked to strokes and acupuncture to puncturing organs.

I often hear “But it is natural so it is safe” or “I don’t want to put all those drugs in my body- I prefer natural treatment.” What so many people fail to realize is that natural does not mean safe. So many natural things in this world are dangerous- berries, mushrooms, and poison ivy for start. The thing is so many of the medications on the market come from nature and have been improved upon so they are safer and more effective. One example is aspirin, which initially comes from willow bark. There are dangers from the completely natural willow bark and aspirin the same. The difference is aspirin has been tested and put into the safe, same dose in every bottle with dosing specifications included. The risks are assessed and addressed whereas natural products usually only claim they are natural and the public assumes that means safe and doesn’t question the risks of the treatment further.

3. Costs

Alternative medicine profits off people with chronic illnesses. I’m not going to try and argue that “big pharma” doesn’t profit off us being sick as well. However, when we pay for medication we are paying for something that has been proven to be effective at least some of the time. With good insurance, these treatments are likely to be at least partially covered. With alternative med people pay, and they pay big, for something that has not been proven to help with their condition- or any condition at all.

People with chronic illnesses already have to deal with crippling medical debt and are just desperate enough to try anything- any crazy alternative medicine no matter how small the chance there it has of actually helping them. People know this and they benefit off of it. They take advantage of the desperate.

4. It Assumes Laymen Know More Than Doctors

There is a reason we should only trust medical professionals to treat medical conditions. The human body is infinitely complex and so many things can go wrong. Doctors and pharmacists spend a large chunk of their lives in school learning how to treat patients better and minimize risks. But alternative medicine professionals? Anyone can become one. They don’t have to know much about the human body or even anything about the condition they claim they can help with.

5. Patients End up Constantly Chasing Hope All The Time

Having a hope certainly isn’t a bad thing. Having false hope in a treatment that will cost you hundreds, if not thousands, and let you down is a bad thing. A lot of people with incurable, chronic illnesses, if not all, go through a time similar to the bargaining stage of grief. They try anything- no matter how slim of a chance it has of working. Alternative medicine con men know this and they take advantage of it. They promise cures to our chronic conditions. They are in the business of selling false hope.

False hope hurts. Putting 50+ hours into biofeedback that claimed to cure (or hugely improve) my POTS and getting so little out of it. I was crushed by letting myself hope I could get better and then continuing to be sick no matter how hard I tried. The biofeedback technician blamed me; I blamed me. Even worse, my loved ones bought the false claims the biofeedback technician made. And when I wasn’t cured? They blamed me too. It was one of the darkest times of my life. The disappointment consumed me.

6. It Claims To Fix You, Not To Manage Symptoms

Trumped up claims of efficacy are a hallmark of alternative medicine. All the medications from a true doctor I took only claimed to possibly manage the symptoms of my conditions. However, alternative medicine practitioners claimed that they could cure my incurable illness or basically make all the symptoms disappear.

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My conditions are incurable. Cutting out gluten, doing biofeedback nonstop, becoming vegan, yoga, walking, crystals, needles, etc. is not going to make an incurable illness curable. If the cure was truly found actual scientists and medical professionals would be all over it. Alternative medicine conmen making these outlandish claims produces false hope, keeps people from learning to live with their conditions, and makes conditions harder to understand. That leads me to our next point.

7. Pseudo-experts Make Understanding Conditions Harder

Education on conditions is important to people being supportive. When alternative medicine conmen enter the conversation they dilute the available information with false claims rather than facts. This makes the condition more difficult to understand for the patient, medical professionals, and loved ones. Pseudoscience, therefore, makes the lives of patients much more difficult.

For example, I have had doctors tell me that my conditions would be cured by cutting out inflammatory foods. This diet has no evidence to back it up but somehow made it into my doctor’s education on my conditions. Getting suggestions that indicate a fundamental misunderstanding of my condition (that it is incurable) is frustrating and disheartening.

For other examples, you only have to look as far as support groups. There is so much pseudoscience and misinformation that many patients don’t even understand the basics of their condition.

8. Alternative Medicine Simply Does Not Work

There have been many studies into alternative medicine and the results are conclusive- alternative medicine simply does not work. There is a common joke in the science community: What do you call alternative medicine that works? Real medicine.

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So before you consider the next random treatment suggested to you- check it out first. Is there any good evidence that it helps people with your condition? Is it worth the money, the false hope, the risk, or the blame you will likely receive when it fails?

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!

Lessons In Resentment

Accepting help is a hard skill to master. In my life, that skill has been made less attainable by a certain type of person. They always volunteer to help me- I do not ask. But then they get in over their heads and instead of talking to me about it, they start to resent me. That resentment grows and grows to the point where they become abusive, suddenly kick me out of their lives, or turn me into a villain in their heads.

Recently, I was offered a place to live rent-free by two friends until I could receive disability or be able to work again. They offered. I did not ask in any way, shape, or form. I asked over and over again if it was still okay and over and over again was told that it was. I worried about being a burden and communicated this. I worried they wouldn’t talk to me if there was a problem.

However, over time they became less kind. Eventually, when I asked to be treated with kindness, everything blew up. I was called names, told I was using them, told they were actually trying to make me cry, and promised I would be kicked out if I kept acting how I was acting (asking to be treated with kindness). I was thoroughly confused until I heard, months after I moved out- from other people, that they were upset about money.

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All they needed to do is say something. But when things go unsaid? Resentment poisons relationships. It grows and grows until everyone has been hurt. Communication and honesty are the antidotes, but it is so hard to find people who realize this. All I had ever done was try to communicate when things were bothering me- if they had done the same it wouldn’t have ended in such an ugly way.

Instead of treating me like a human being and talking to me they got in over their heads and then hurt me. In the end, their “help” hurt me more. I would have rather struggled to pay rent than to be treated that way. I would have rather never had them in my life at all.

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I don’t share this story because it is a fun thing to reminisce. I share it because there is a clear lesson here I hope others can learn from.

Caretakers & Helpers

For those who volunteer to help someone- if you get in over your head SAY SO. Know your limits of what you can give. You aren’t being brave or saintly for pushing past these. All that exceeding those limits does is lead to resentment, and like I’ve said, resentment hurts everyone involved. If you take care of yourself you can better help others better as well.

People With Chronic Illness

For those being helped, hesitate taking help from people you don’t trust to communicate with you even if it is a difficult conversation. Even if you are receiving help, you deserve to be treated kindly. Don’t fall into the trap in thinking that you owe it to people who are helping you to be purposefully hurt, abused, degraded, humiliated, or mistreated in any form.

You are not a burden or responsibility to be put up with, but a human who should be treated as such. Anyone who loses sight of this doesn’t deserve to be in your life.

The Problem With Telling Patients They Will Grow Out Of POTS

Telling a young person with a chronic illness that they will grow out of it sounds like fantastic news. With POTS, it is a trap that is easy to fall in. It feels lovely to give someone hope and good news who is obviously suffering, but when it is false hope it can cause some serious issues. It may sound strange, but when we are waiting for something horrific to end we stop actively living our lives. Everything becomes about what will happen after this terrible phase in their life. “I’ll finally start dating once I grow out of it.” “When I grow out of it I can have a social life again.” “When I grow out of it I can finally travel.”

As many as 1 in every 100 teens has POTS. Sometimes these teens grow out of POTS in ways adults seldom do. I was diagnosed with POTS when I was 18. Because I was right on the borderline it was assumed that I would grow out of POTS. I had at least 5 different doctors inform me I would grow out of POTS.

As a result, I stopped living and just survived, always waiting. When people are just living out the time in their life waiting for when things change very little joy enters their life. Waiting leads to not seeking out the things you love and not connecting to the ones you love. All the joy and happiness in your life is always in the distant future. Depression seeps in and for awhile you can withstand on hope for a healthy future alone. But when year after year it doesn’t come it gets harder to believe that things will change and suddenly all that you were living for slips away.

And the hope did slip away.
As I got older doctor’s stories changed. Instead of the confident outlook they had at 18, 19, and 20 things started to change when I turned 21. At 21 they told me, “You’ll probably still grow out of it.” I was heartbroken when it wasn’t true. At 22 they told me, “You could still grow out of it.” I was dismayed. And at 23, “It is unlikely you will grow out of it.” By 23 I was destroyed. At 24 and 25, there is no talk of growing out of POTS.

False hope hurts.
I started to feel lied to- stupid for looking forward to things. Not growing out of my condition led to a dissipation of trust, especially of the doctors who gave me false hope. Sometimes doctors in general. Why should I ever listen to them? I was convinced that because they lied to so many times and would do it again.

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False hope keeps us from coping with our illness.
When my illness felt temporary it was easy to just be in denial. I would pretend to be healthy, then push myself too far and be bed-ridden for weeks. I would try to go out with my friends, keep up with them, and then not be able to walk for the next two weeks. I convinced myself I was still a normal healthy teenager then came crashing down. But nothing was wrong. In doing so with my illness, I hurt myself in this stage of denial. Because it was all temporary I didn’t even bother dealing with my condition. As a result, I missed out truly living. If I had learned to manage and cope with my illness I wouldn’t have missed out on so much of life. I would have spent that time adapting instead of waiting. I could have spent that time learning to be happy despite my condition.

In the year before my 24th birthday, I came to terms with the fact that I am not one of the people who will grow out of POTS. Since I have had the best years in terms of coping. In no way has any of this been anywhere near easy. Letting go of that false hope, disappointment, anger, and frustration really helped me actually deal with what was happening and move on to live my life. I learned to cope; I adapted to survive.

I truly understand the instinct to tell people they will grow out of the condition. Even at the Dysautonomia International Conference, I found myself saying that I hope others would grow out of POTS. I know that false hope has made things harder for me so why would I impose that on other people? We want something to hold on to and to give others to hold on to. We don’t want to admit that the reality is that this is something we will have to deal with indefinitely. However, learning to adapt to POTS and live life despite it made for a far more satisfying life than waiting for it to pass.

My advice to anyone, likely to grow out of POTS or not, is to adapt and learn how to live your life and find happiness despite your condition- whether temporary or forever. Waiting for it to get better and putting your life on hold will only hurt you more. It is okay to have hope but don’t let your hope leave you frozen in place.

You Don’t Owe It To Anyone To Try Every Treatment

Two weeks ago I went in for an injection in my back. The doctor, instead of being focused on my pain and comfort, decided to use me seeing him as a platform to push alternative medicine on me. By the end of my time with him I was sobbing because I was so frustrated from not being heard. Since then I’ve come to the realization that I don’t owe it to anyone to try a treatment especially one that has not been backed up by science. I will no longer accept health care “professionals” who are judgmental about me not trying hard enough to cure myself.

In the beginning, 8 long years ago, when I first got really sick I tried everything. Every possibility of improvement I jumped on. Every time I got my hopes up and had them crushed again and again. As if that disappointment wasn’t enough, when these things didn’t make me feel all the way better it was always my fault. I must have not been following the diet close enough. I wasn’t practicing hard enough. No one considered the possibility that the treatment, one that hadn’t been verified as successful, just didn’t work.

When alternative medicine gets pushed on patients it is the patients that get hurt. Dealing with having your hopes crushed over and over is hard enough. Dealing both with that and with feelings of inadequacy when you are trying your best is even worse. In real medicine, if someone takes their meds and they don’t work they don’t get blamed for not trying hard enough. When one blood thinner doesn’t work me don’t blame the patient for not trying hard enough to thin their blood; instead the dosage is adjusted or a different medication is used. Real medical professions realize that medications and treatments work differently for different people.

You can bet I will be writing more on the subject, but here are some ridiculous highlights that came from my surgeon:

“Just try an anti inflammatory diet. I did and I feel like I’m 21 again!”

Talking to someone who has been in a ridiculous amount of pain since they were 18 about how you felt 21 is insensitive. Youth does not always mean health.

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“You’ll lose 21 pounds in 21 days.”

What are you an infomercial?!

 

“Inflammation is the cause of all your problems; you just need to cut it out.”

Actually, my genes cause all my problems. No diet will change that. Also, inflammation is not always a bad thing. It helps us heal, it lets us know when there is a problem. Saying an anti-inflammatory diet will fix everything is oversimplifying things. Didn’t you go to medical school?! Or we using “doctor” in a looser sense?

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“Do you eat gluten? You haven’t cut it out. That is your problem.”

I have cut it out. I tried that. Do you think you’re the first person to tell you that? Cutting out gluten is not the solution to everything.

 

“People drive from Kansas just to get this list, but I’m going to give it to you for free.”

Great a list of potentially dangerous supplements and unwarranted “medical” advice. My favorite.

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“Actually there is an entire edition of a journal dedicated to this.”

Yes, there are articles in academic journals about anti-inflammatory diets. They are written by chiropractors and nurses who monetarily profit from people trying anti-inflammatory diets. There is almost no information on any actual science behind it from credible sources. Just because the article is in an academic journal doesn’t mean it is reliable.

 

“You need to get off opiates.”

He said this one to me as I was sobbing in pain in front of him. He is not the doctor that manages them, it was not his business. He also said this after telling me that the nerve in my back was pinched and asking if I had surgery scheduled. When someone dislocates their shoulder they are given opiates. EDSers deal with that pain daily all of their body, but then are judged for needing pain relief. I haven’t slept a good nights sleep in four months due to pain, but yes I’ll stop opiates right away.

 

“You need to try biofeedback.”

I have. I even use some techniques for relaxation, but it didn’t cure me.

 

“You just didn’t see a good one.”

I saw one who is an expert to my condition.

 

“You have to practice more.”

I was practicing even more than they recommended. I tried at it. I really did, but when alternative medicine fails it is always the fault of the patient- not the alternative medicine.

 

“I treat people with EDS all the time.”

He had no understanding of EDS, prescribed me muscle relaxers (contraindicated to EDS), and obviously had no grasp of the condition. I really hope he was lying here and that no one with my condition has had to deal with his ignorance.

 

“Just try what the doctor is recommending.”

This one came from the judgmental nurse on staff. She said this after the doctor was done spewing his pseudoscience and after I had already said that I had done the research and there wasn’t science to back it up AND that I couldn’t eat most of what is in their proposed diet. Chronically ill people don’t deserve to be shamed for not trying things that are not backed by science.
Life with a chronic illness is hard enough. We don’t deserve to be harassed by people for not trying a treatment. I’m not saying that all alternative medicine is evil. For example, massage has helped me wonderfully. What I am saying is that people with chronic illnesses do not deserve to be harassed or judged for not trying hard enough for not trying every treatment under the sun. 

My Chronic Illness Does Not Make Me Your Back-Up Plan

“Oh yes, on Tuesday I don’t have anything. Let’s drink wine and watch that new Pixar movie!”

“I’ll totally watch binge watch ‘House of Cards’ with you this weekend!”

Tuesday comes, and my friend or partner tells me they are grabbing drinks with someone and excitedly rushes out the door. I sit there confused because I thought we had plans. Sometimes there is a strange offering of an explanation before they go, but more often they leave without even acknowledging we ever had plans.

It happens over and over. I become the back-up plan because of my chronic illness. I’m the plan people have if no one else wants to do anything Friday night or if they are too tired to go out.

What people fail to realize is that they were my only plan. There are so many days when I can do nothing more than watch a movie and cuddle. When my healthy loved ones say they are going join me, I remember. I am excited to finally have company in this lonely struggle. I finally have something to look forward to in their company.

It hurts to realize to them I am the back-up plan. Easily changed and forgotten. So easily forgettable when the promise of their company was beyond unforgettable to me.

It is already a struggle to maintain relationships. I have to find people who are willing to hang out in a low-key setting instead of always going out. Even when I find people who understand that not every hang-out will be an outdoor adventure, it is a struggle to find people who take your plans seriously.

Staying social with a chronic illness seems impossible. I’m either branded a flake or have my plans not being taken seriously. It is no wonder socializing is such a struggle with chronic illness.

What can you do to help? Take plans you make with everyone seriously. Don’t treat your chronically ill friend as a back-up plan.

 As seen on The Mighty.

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.

Domestic Violence & Chronic Illness: 9 Things I Wish I Knew

When we hear about caregivers abusing patients it usually has to do with elderly abuse. There is a big part of this abuse we haven’t talked about. Caregiver-inflicted abuse can come from anyone, at any age, and can take many different forms.

The abuse inflicted by a caregiver can be incredibly difficult to notice. Frustrations are high when dealing with the illness and sometimes that can lead to excusing unacceptable behavior. Emotional abuse may be even more difficult to recognize. Often the chronically ill person feels like the caretaker is doing them such a huge favor that they could never complain about how they are treated. Why wouldn’t we? We are constantly told we are lucky  for having friends or partners in our lives.

Unfortunately, I speak from experience. I consider myself an intelligent person and I knew what red flags to look for. I thought I knew better; I would never find myself stuck in an abusive relationship. But anyone can fall into an abusive relationship, especially when they feel like they don’t bring much to the table (like many of us with chronic illnesses).

When I moved across the country a couple years ago it was really hard to function without support. I felt incredibly alone. At one point, I paid a cab driver to be my ride home after surgery. I was living in cheap hotels, in my car, or on couches; I was also really struggling with handling my health.

Then along he came. He didn’t treat me like a sick person. He treated me like an equal, at least in the beginning. It was wonderful to have someone else help to face the struggles of illness face on.

The abuse started gradually. Small threats, constantly getting mad at me, and insults became more and more common. He was constantly making me feel guilty for being sick and even claimed I was faking it. I had no one else and he was helping me some with day-to-day life so I just didn’t even recognize the warning signs. After all, I felt like a burden to all my loved ones anyway. He was just confirming what I already thought. In my mind, this messed up relationship was exactly what I deserved.

I finally began to see the problem when he had a problem with me trying to make friends and began to steal from me. Even then, it was hard to leave because I relied on his help so much. I made excuses. It is hard to date me, dealing with illness is hard, he isn’t bad all the time. I tried to break up with him a couple times, but he convinced me to go to couple’s counseling and scared me into staying with him.

Looking back there was an abundance of warning signs. He put his fist through a microwave because I didn’t feel well enough to clean it out. He broke the trash can because I couldn’t take out the trash. He refused to close the blinds when I had a migraine. He refused to let me keep the apartment cold so as to not faint. He threw me on the floor when I didn’t dry off in the shower to his liking. He left me stranded without a ride on multiple times, once over an hour away from home. I had to limp miles in the snow at more than one point. He locked me out of my apartment.

The warning signs may seem obvious, and they are now looking back on that time. However, it took me nearly having to die before I did finally recognize him as abusive. One night he drank too much, pushed me off the bed onto my head and gave me a concussion after trying to strangle/kill me. I was able to claw at him with my nails enough to get away, but still lost consciousness.

I’m sure he still has scars. It was one of the most terrifying things I’ve ever gone through and he was the only person I had in my life at the time. The concussion was so severe I had to withdraw from school. I could have died that night, and I truly wished I could have seen the big picture before getting hurt.

This is not an easy topic to write about, but I need to share with you what I wished I knew then:

  1. You are not a burden. You can enrich the lives around you, illness or not.
  2. You deserve supportive and loving relationships even if you are sick. Do not stick with anything less.
  3. Emotional abuse can be as damaging as physical abuse. It should never be ignored or excused away.
  4. You don’t deserve to be threatened, hurt, or mistreated by anyone just because you are sick.
  5. You don’t deserve to feel guilty over feeling sick when you’re unable to control it.
  6. If you are in an abusive relationship do not bother with couples counseling. Abusers won’t be honest or work on their problems. Everything will be turned on you as if it is your fault. Couples counseling made my partner more violent and convinced me further that I deserved to be a victim to his bad behavior.
  7. Ending up with an abuser is not your fault. It is difficult to not feel stupid for getting into the situation, but it can happen to anyone. It is more likely to happen to you if you have a disability. What you go through is your abuser’s fault, not yours. However, make sure you don’t allow yourself to remain a victim out of embarrassment when you finally do see the signs.
  8.  Don’t stay with an abuser because you are worried about being alone or taking care of yourself. Being alone is hard, especially with a chronic illness, but it is definitely better than getting hurt or nearly killed. You aren’t alone in your struggle. If there aren’t friends or family you can reach out to there are online and in- person support groups. There are also counselors who work with chronic illnesses and abuse that can help you recover. Shelters are an option if you have no one else to turn to. For more information or to speak to someone right away the domestic violence helpline should be able to help: thehotline.org or 1-800-799-SAFE. It isn’t easy to get away from an abusive relationship, but it will be so much better for you and your health.
  9. If you see the warning signs or red flags that your caregiver is abusive talk to someone you trust and get away from them as soon as possible!

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Caregiver-inflicted abuse doesn’t have to come from a romantic partner. It may come from friends, parents, and even health care professionals as well. No one deserves this abuse and you should never stay in an unsafe environment because you feel like you deserve it.

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.