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.

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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.

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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.

10 Tips For Going To Concerts With POTS

Up until recently I had given up going to concerts. It just seemed impossible with POTS. A lot of times we are required to give up activities we love for our condition. I think it is important to still have a life- to have things to live for and look forward to. So here are some tips to make concerts a bit easier in the hope concerts will not be added to the list of things we cannot do because of our illness.

1. Call Ahead

     The venue makes a large difference in whether I can attend a concert or not. I have had venues, such as Red Rocks in Colorado, make no effort to help accommodate me. In fact, they won’t even call me back about accommodations. Therefore, I recommend contacting someone at the venue prior to buying tickets. Some good questions to ask are:

  • Is it wheelchair friendly? (Although it is illegal some are not)
  • Are there places for wheelchairs where you can see?
  • Will they let you in early to get a seat where you can see?
  • Can you provide a seat for whoever goes to the concert with me? It will be basically impossible to communicate otherwise (and awkward).
  • Does the venue get extremely hot?

2. Wheelchairs Help

     Having an invisible illness basically guarantees people will not go out of their way to accommodate you. Using a wheelchair means that your illness becomes visible and it guarantees a spot to sit throughout the night.

3. Load Up On Salt & Water

     I drink water and load up on salt even more than usual before events that cost a lot of spoons. Talk to your doctor about safe amounts of either.

4. Frequent Breaks If You Get Overstimulated

     A lot of sound and noise can lead to me feeling overstimulated and foggy. Taking frequent breaks to step outside for fresh air or to the bathroom keeps the overstimulation from bothering me as much.

5. Bring Earplugs

     Some shows are extremely loud and can set off headaches or overstimulation. Having earplugs in case you need them is a good idea.

6. Wear layers

     If you have heat or cold intolerance wearing light layers keeps you from having as many problems with temperature. Commonly, these venues get very warm with body heat so the lighter the layers the better.

7. Small Shows And Venues Are Better

     Small shows and venues tend to be less warm, less loud, and altogether easier to navigate. If you aren’t too picky about what concert you want to see I would definitely recommend finding a smaller show.

8. Wear Compression

     Wearing compression helps me a lot during any event that takes a lot of effort. I find that both tights and abdominal binders are worth the extra heat because they keep the blood pooling at bay.

9. Don’t Go If You Have Something The Next Day

     Even with all of these changes going to a concert will likely wipe you out and cost a lot of spoons. I try to only attend if I do not have somewhere important to be or do the next few days.

10. Don’t Feel Bad About Asking For Accommodations

     Sometimes I find it difficult to ask for help or feel like I am putting people out. It helps to remember that having a chronic illness isn’t your fault and you deserve to live your life as much as everyone else. Making accommodations is their job and doesn’t take much effort from the staff at the venue. In fact, I have heard that it is one of the easier parts of their job (do you know how many people throw up of concerts?).

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.

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*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.

What Is A Poor Man’s Tilt Table Test?

7C11274/3A11275Tilt table tests (TTT) are uncomfortable, expensive, and time-consuming. It is agreed that TTT should be the standard for POTS diagnosis, but wouldn’t it be great if we had a way to look for POTS without going through the entire test? Well, we can. The poor man’s tilt table test as it is called is a check at your heart rate and blood pressure throughout laying, sitting, and standing.

The poor man’s tilt table test is not as reliable and should not be used by laypeople for diagnosis. However, it is a helpful tool to see if you should see a doctor about an official TTT or see a POTS specialist.

If you do not have a blood pressure cuff you can still record your pulse as that is helpful to know as well.

Materials

Heart Rate Monitor (can be on your smartphone)
Blood Pressure Cuff
Another Person

Steps

1. Find a clear space where you can lay, sit, and stand comfortably.
2. Lay down. You may have to lay for up to 10 minutes for your pulse to slow before measuring.
3. Check your heart rate and record. Repeat.
4. Check blood pressure and record. Repeat.
5. Sit up and wait a couple minutes
6. Check pulse and record
7. Check blood pressure and record. Repeat.
8. Stand
9. Check pulse and record (check multiple times over the time you can safely stand). Repeat.
10. Check blood pressure and record. Repeat.

Position Heart Rate Blood Pressure Symptoms & Notes
Laying 1
Laying 2
Sitting 1
Sitting 2
Standing 1
Standing 2

Shortcomings

Doing a formal TTT means that you have medical professionals around to help if something goes wrong. Doing this version means that you may faint and hurt yourself. If you are worried have someone to help keep you safe or wait for an official TTT.

TTT tilt you slowly in a way in which your leg muscles are not engaged. Leg manoeuvres can help with POTS symptoms and standing by yourself means that you may use these manoeuvres and skew the results. If you have POTS symptoms you may have adopted this technique without even realising.

9 Common POTS Myths

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

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

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

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

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

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

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

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

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

 

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

 

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

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

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

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

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

 

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

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

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

POTS can be a big deal.

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

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

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

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

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

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

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

Visibility and Invisible Illness: 5 Struggles Unique to Having an Invisible Illness

Note: To be clear I am not saying that invisible illnesses are more difficult than visible illnesses. I am not comparing or ranking struggles, just pointing out differences so we can better understand each other better. Each brings its own specific problems, and both are incredibly difficult to deal with.

It has been on my mind lately how different having a chronic illness can be for each person. Recently, I was hanging out with friends when one friend asked me how I had been feeling. I explained that I was better, but not great (my go-to response because what else do you say). Then, someone I considered a friend said “Is there anything you don’t have?”

I was taken aback- why would you say something like that?! Well, his explanation really got me thinking. He has a chronic skin condition that has had some pretty bad flares. He explained that he hates when people pity him and he prefers to crack jokes instead. I honestly didn’t know what to do with that response. He gets pitied so often he thought an insensitive joke would be better? I rarely get pity and that hasn’t been my experience at all. I just could not relate.

So what is so different in our experience? How can we relate so little to each other? Visibility.

I tend to be in casts, braces, on crutches, or in a wheelchair more often than the average person. At these times my illness becomes visible. The majority of people of us with POTS usually deal with the struggles of an invisible illness. Invisible illness is when someone has a chronic illness, but you can’t tell just from glancing at them. Occasionally, we are visibly sick because of blatant POTS symptoms, PIC lines, mobility devices, or feeding tubes. However, the majority of the time I don’t look obviously sick. This is a blessing and a curse. I can pass for healthy and avoid constant glances and invasive questions which obviously can be nice, but here are some of the terrible parts as well:

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1. Being Told It Is All In Your Head

I was told for years that my symptoms are all in my head. It is harder for doctor’s to diagnose problems you can’t see. I’ve been told by doctors that I am hypochondriac, that I have a low pain tolerance, that I have Munchausen’s, that I’m overreacting, that I’m anxious, depressed, and anorexic. The worst part? After long enough my family, friends, and even I started to believe them. After hundreds of tests it isn’t hard to believe that maybe you’re just crazy.

Emotional stress isn’t the only danger of having no outward symptoms. I nearly died because no one believed my pain when I had a blood clot in my chest. I was told I had low pain tolerance, was a drug addict, and just had a “stomach bug.” I am constantly having to be my own advocate to ignorant health professionals who don’t believe me and it is thoroughly exhausting.

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2. Diagnosis Can Take Longer

When you only have symptoms and not obvious signs of illness getting diagnosed can be more difficult. With a broken bone they can take an X-ray and tell exactly what is wrong. When you have generalized symptoms that sometimes only be seen in one situation (i.e. Tilt Table Tests) it can be nearly impossible to diagnose and doctors jump to the easy solution when they don’t know the answer- dump you with the excuse that it is a Psychology issue.

3. Difficult For Friends and Family To Understand

Friends and family don’t understand why you can’t do the things you used to because we look the exact same. It is more difficult to understand why your teenager suddenly can’t help with chores when they look the exact same. Friends don’t understand why you are suddenly cancelling on them when you don’t look sick.

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4. Judgement From Strangers

When strangers see people with invisible illnesses in a wheelchair or using handicap bathrooms, parking, etc. they jump to judgement. I get rude comments, and other’s with invisible illnesses regularly get rude notes. I get the comment “but you don’t look sick” and am dismissed and chastised. I nearly never get sympathy. If you need more convincing, these notes are really common to receive on our cars with invisible illnesses:

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Could you really be anymore ignorant and insensitive?

5. Judgement From Those With Visible Illnesses

The strange things about it is that there are a ton of us with invisible illnesses, but we are misunderstood even by others with chronic illnesses. This week someone called attention to a post on a Facebook group called Disabled Dating that read “If you don’t look like you have a disability you will be booted from the group.” So many disabilities aren’t immediately obvious! How do you even say something like that?

This is a great website for invisible illnesses.

Visible Illness Problems

I have much more experience with my illness being invisible, but my experience when my illness is visible has been completely different. People with visible illnesses do tend to get more sympathy, but there are also terrible downsides I would never wish on anyone. People ask invasive questions about their condition, and they get a ridiculous amount of pity. We could all use some empathy, but pity takes it a step too far. People with visible illnesses are talked down to in an incredibly dehumanizing way. People are constantly saying things like “you’re so brave” or “you poor thing.” People also expect some visible illnesses to be short-term and constantly ask when people will feel better, be getting out of a cast, stop needing a port, or stop needing a feeding tube. Constantly explaining your problems are chronic is also frustrating.

Our experiences with visible vs. invisible illness are certainly different in many ways. One thing in common is people have no idea how to talk to chronically ill people. We should at least learn to relate to and talk to each other.

Do you have a visible illness? Would you like to share your experience on how the challenges differ and are the same? Submit a guest blog post! Email me