Call Me by Your… Identity First Language

Person First vs. Identity First

I hate to tell you, but you’ve stumbled into a grammar debate. But wait! Don’t worry, I’ll keep the grammar tutorial simple, super short, and sweet. We will have plenty of time to have fun talking shit about the special needs moms that silence everyone #ActuallyAutistic. I promise.

Person- first:
People with a disability
People with autism

Identity first: 
Disabled people
Autistic people

That’s it. All done with the grammar lesson. I told you it was short. Most disabled people think “person first” language is unnecessarily complicated and condescending. Don’t worry about person first unless that person first brings it up. Do worry about the special needs moms who think their voice matters more than the disabled people affected.

Failures of Person First Language

1. It implies our disability is baggage to be set aside, not that it is a part of us always. 
2. It fails to grasp the complex issue of how we actually relate to our disability. 
3. Person First often/ always (in my experience) accompanies a condescending attitude as well as ableist, demeaning comments. 
4. It can turn our disability into a “dirty word” and hinders later opportunities to talk and educate on disability.

My advice? Default to skipping the person first language; still be open to the chance of a disabled person around you expressing a preference for person first. We are all different. Universal advice doesn’t exist.

Welcome Questions

You don’t have to be perfectly comfortable or know everything. If you aren’t sure- ask! “Is person first language your preference?”

Most of us prefer someone trying to get educated over never saying the wrong thing (because you say nothing.) Just don’t pry beyond that unless you are close.

Deeper questions are usually welcomed from close friends and family- when they don’t come from an entitlement to our privacy. Questions from strangers are horrifying, but I don’t know a single disabled person who wouldn’t just be thrilled someone we love is finally making an actual effort to listen to our needs.

Ask The Right People

Never correct a disabled person on how they choose to speak about themselves. Don’t lecture us about how rejecting person first means we are all “defining ourselves as our disability.” Even if we were, our relationship with our disability is none of your business.

This person- first debate is a great example of how we need to get our information on how to support oppressed groups from the oppressed we want to support. We need to ask disabled people how we should treat disabled people- and not correct them!

“Special Needs Moms”

Ablebodied people can’t speak for disabled people but often try to. They will go as far as actively and deliberately silencing us. This can be especially bad for autistic people and it unfortunately is largely driven by the toxicity of “special needs parents.” Rather than buying into the hypocrisy, we need to check out what actually autistic voices have to say- not their mothers.

(Note: Many autistic people don’t even consider autism to be a disability, but rather a fundamental part of who they are.)

Many autistic people consider their autism a part of who they fundamentally; therefore person first language is wholly unnecessary. “Autistic person” makes more sense than “person with autism” in those cases. it’s similar to any other trait: tall person, young person, white person, funny person.

Looking Forward

Our language doesn’t have to be perfect. Allies don’t have to be perfect, but they do need to try.

How? Here’s a start:

1. Not correcting how oppressed people speak about themselves is the first step. This goes beyond person- first language.

2. All we have to do to be better allies is to listen to disabled people. Watch tags like #ActuallyAutistic where you can get educated from the right people. Always seek out disabled voices when you have questions- only we can answer them.

3. Don’t assume you know more about disabled people, their disability, or how they relate to their disability than they do- even if you’re their parent.

4. Finally, don’t assume you are entitled to personal details about their disability. Listen to their preference on person first and then don’t push for more.

The Problematic Push for Absolute Positivity

I am not denying that hope and positivity can be powerful tools to get past obstacles in our lives. However, absolute positivity is often pushed on chronically ill people. By absolute positivity, I mean that we are expected to never complain, have a bad day, get down about our limitations (or really have limitations at all), become discouraged, or stop believing that we can do anything we set our mind to.

I won’t deny that the pressure to remain positive often comes from a good place or that having a generally positive outlook is important. People think that they are helping by insisting we remain positive. However, forcing constant and absolute positivity on people with chronic illnesses prevents them from sharing their feelings and generally makes their lives more difficult.

Creates Unreasonable Expectations

POTS, an autonomic nervous system condition, has many different outcomes for patients. Some people eventually grow out of it; some others have very manageable cases through lifestyle adjustments, medication, or both. The people who are most often actually given platforms to talk about their experiences with POTS, whether at conferences or by ‘likes’ in Facebook support groups, are almost always the people who grow out of POTS or who have very few limitations after treatment. It is understandable people want hope, but it isn’t realistic or helpful to most people with POTS to only see these people.

Being diagnosed with POTS isn’t the end of a life. People, even with the most severe cases, can still live happy and fulfilling lives, but focusing only on people who have made it “past” their sickness keeps us from realizing this. I know the first few years after my diagnosis I wasn’t happy with small improvements and learning to live with my illness. I was only happy with the possibility of being cured. Anything less meant my life wasn’t worth living.

After years of trying medications and lifestyle changes, it has become obvious my POTS isn’t going away. It is something I have had to learn to live with. While it hasn’t been easy, I have found happiness and meaning in my life. My only wish is that I could have found it sooner. I know that if we as a society focused on realism in the face of disability instead of blind positivity, longshots, and false hope I could have come to terms with this version of myself earlier.

This happens for a lot of illnesses. We need to create reasonable goals and shoot for those. Having hope is important, but learning to live with your reality is invaluable too. We can stay positive that we might end up being one of the lucky ones while learning to live with our current reality. It’s the difference between absolute positivity and staying positive, yet realistic.

Doesn’t Allow Us to Mourn or Process

When people who were previously able-bodied or healthy first get sick they go through mourning for their old life. It is an important process in coming to terms with your new situation, much like it is an important process in coming to terms with a loved one’s death. When absolute positivity is forced down our throats, we don’t feel like we can go through the process of grief.

Having a chronic illness and chronic pain guarantees that there will be bad days- days of frustration, hopelessness, sadness, and anger. On these days, having absolute positivity thrust upon chronically ill people means they don’t talk about these feelings. Instead, these negative feelings get bottled up and not discussed. Psychology experts agree that just suppressing feelings is not the best way to be happy; talking about and valuing all feelings is the best way to be happy.

Prevents People from Getting the Support They Need

When absolute positivity is expected from the people around someone with a chronic illness they lose the ability to seek support from those around them. I’ve heard about it too many times, chronically ill people try to talk to their loved ones about what they are struggling and are shut down, so often in the name of absolute positivity. They are told that if they didn’t “complain” or “whine” about their illness so often that they would feel much better. Sometimes they are brushed off and told that they will get past it and not to dwell. We get reminded that someone out there has it worse. We are told to stay positive as a means to shut us up when what we really need is someone to talk to.

These responses aren’t helpful. Often speaking about something that is bothering us takes its power away. Talking about my conditions, my pain, my frustrations, my struggles with an understanding friend has always made them easier to face. Additionally, dealing with my condition is something I deal with every moment of every day. If someone cares about me and wants to be in my life then it is something that is going to come up in conversation.

Sometimes we need to commiserate and complain about the hard part of our conditions. It can be helpful to our overall mental health; talking to someone who understands (or tries to) is the best solution to me feeling down. Once I am able to talk about the negative parts of my illness and be heard, I am able to move on and actually feel more positive.

Expects Us to be Inspiration Porn- Not People

One form that absolute positivity takes on when applied to chronic illness is inspiration porn. Inspiration porn is co-opting a disabled person’s struggles, accomplishes, and experiences for the sole purpose to inspire able-bodied people. It diminishes a living person to an inspirational image telling able-bodied people if they remain positive they can do anything- because some disabled person was able to go rock climbing!

Disabled people make people uncomfortable. They don’t like to think about the fact that we exist. Turning us into inspiration displaces that discomfort. It expects us to accomplish anything, never complain, always wear a smile, and always have a good attitude. These aren’t even reasonable expectations for able-bodied people. We all have bad days, we need to be able to process and feel negative emotions without judgment.

It Is More Difficult to Get Accommodations

When the expectations for disabled people are that they should be able to do anything with a good attitude it makes them harder to get accommodations. When we are told we should be able to do anything in spite of our condition, we struggle to be put on disability, get handicap ramps, get placards, and get job/ school accommodations. And when we can’t work, walk up stairs, walk across the parking lot to the store, or work/ go to school without these accommodations? It is our fault for being lazy or negative.

Absolute positivity gives people an excuse not to make the world welcome to people who are disabled because people believe anything is possible with a good attitude. But no amount of positivity will help someone who is paralyzed make it up a flight of stairs, but a wheelchair ramp will. Having a good attitude won’t let someone understand who can’t hear, but an ASL translator will. Not complaining won’t lead to me suddenly being able to stand for hours at a job without fainting but accommodations can.

Treating Positivity as a Cure Blames People for Being Sick

Positivity is constantly being forced on me regarding my chronic illnesses. What these people fail to understand is that you can have a positive outlook and still feel negative emotions. Having these normal emotions does not mean I am just not trying hard enough. Feeling your feelings is a good thing! We shouldn’t be blamed for our illnesses not being better because we have human emotions, but we are.

Able-bodied people are obsessed with trying to reason that disabled people are sick because we are doing something wrong. They don’t want to believe chronic illness could happen to them or good people. Assigning blame to a lack of positivity is easier than considering chronically ill people mostly don’t have control over our illnesses. Blaming illnesses that cannot be controlled by the people who have them is just cruel.

We Can Injure Ourselves Pushing Too Hard

When chronically ill people fall into this way of thinking, they can hurt themselves. When people believe they can do anything if they are positive they can hurt themselves. Pushing past limits is dangerous for people with chronic illness and can result in hospitalization or even death.

It is so important for people with chronic illnesses to remain realistic about our limitations. We can even be positive and hopeful while doing so. However, absolute forced positivity is hurting us, our friends, our support groups, and our communities.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

 

“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?

 

“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.

 

“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.