Why Does Nobody Understand That I'm Ill?

Why Does Nobody Understand That I'm Ill?

So many chronic illness sufferers feel like their loved ones don't care or understand. Why is this such a common phenomenon and can it be changed?
1415
views

This question seems to be a running theme throughout those of us who suffer with chronic illnesses -- particularly the ones that don’t come with a wheelchair, or any other visual signs of our ailments. More distressing, the question seems to be directed, most often, at the sufferer’s nearest and dearest.

So many people I’ve spoken to feel like their family rejects their diagnosis, that their closest friends ignore their problems, or their loved ones fail to give them the support they need. Lord knows, I’ve been there myself; endless hours of frustration, wondering why no one seems to give a toss about my problems.

This theme seemed so recurrent throughout all the support groups, Facebook chats, and blog posts I’ve seen from fellow spoonies, that I began to wonder whether there was an explanation behind it -- we all couldn’t be surrounded by rubbish people, could we?

It’s a touchy subject, for those on both sides of the discussion. Accusing your loved ones of failing to understand or telling sufferers that their annoyance is invalid are both dangerous games to play. However, this is something that we really need to talk about -- and I think I’ve gotten to the bottom of it.

“But I Told Them I Was Ill…”

In my opinion, it comes down to this: you can say you’re ill, you can express that you’re in pain until you’re blue in the face, but without being able to experience it themselves -- how can anyone really understand what that means? Think about it; really consider your problem. If you’re anything like me, the symptoms are such a minute part of the overall struggle. The real hardships come from the repercussions of being in pain all the time -- the exhaustion, the mental blur, the inability to connect with the world around me because of the constant blinding discomfort.

I’ve developed ways to deal with it, but my loved ones don’t know that. They don’t understand that I need things to be planned far in advance but, on the other hand, my life has to be flexible in case a bad flare-up emerges. They don’t know that even the simplest of things become so unbelievably complicated when you’re sick; that eating food is a delicate process, which, if not handled correctly, will end of hours of horror and discomfort, or that sleep is an uncertain and complicated experience that can be ruined by even the slightest thing. Healthy people can’t even begin to comprehend that getting up on a morning and leaving the house is akin to climbing Mount Everest when you’re constantly carrying the demons of your illness.

“But Can’t They See My Pain….?”

This was another one that I struggled with for a while. I was so certain that I wore my pain and discomfort on my sleeve at every moment; that my intense nausea would be obvious to all onlookers, or the electric needles of agony shooting up and down my spine and legs was written all over my face. When you’re living a life of chronic illness, you often underestimate how incredibly well you learn to deal with it. You forget that, whilst your inside might be raging in an ongoing battle, your exterior is calm and composed, and you act like any other human.

I’d traipse around on nights out or daytime trips, getting so annoyed because it seemed like my companions were ignoring my struggles. They’d suggest we go elsewhere, walk some more, or add another activity on -- and I was sure they were doing it to spite me. This, obviously, was far from the truth.

“But They Still Don’t Understand…”

Finally, and perhaps the most heartbreaking, this reason for lacking sympathy was something that I only really came to accept after months of discussing my condition with my boyfriend. We really struggled at the start of our relationship. He really didn’t get it, and the differences in our understanding often led to blows. Even once I managed to explain to him, the rift still existed. But here I began to see something that I could also apply to a lot of other close relationships in my life.

It comes down to this: these people love you so much, so seeing you in constant, incurable pain is almost as excruciating as if they were suffering themselves. They want you to be better, they want you to not suffer; so how do they deal with that? They pretend it doesn’t exist. This is controversial -- I know -- and I’m not going to claim it is a fact, merely the summary of my observations. However, the more I began to consider it, the more I saw it in action.

Remember how hard it was for you to come to terms with your illness? Well your friends and family have to do that as well, and they don’t have the benefit of the constant myriad of symptoms to remind them that it is very much real. The human brain is a subpar tool, particularly when it comes to dealing with difficult emotions, and often its responses are out of our control. Instead of facing our problems and gradually accepting it, we often push things down and reject them from our consciousness. I truly believe this is why so many people struggle to get the support and acceptance that they need from loved ones.

“Why Do I Always Have To Be The Strong One….?”

Unfortunately, this is where things get complicated, because even if you’re able to objectively understand all these factors it doesn’t stop you needing support or having specific requirements. If your friends and family can’t empathize then often they’ll come across as cold-hearted; they’ll tell you to "man up" or equate your problems with their own -- trust me, your back pain will never be the same as a bad Fibromyalgia flare up. This can be detrimental when you’re already struggling to cope and, sadly, I don’t have a foolproof answer for how to deal with it. If they can’t see our pain and they don’t understand anyway, then how are we ever going to get that support? It’s a tricky question, and one that leads many chronically ill people to isolate themselves, or only socialize with fellow sufferers.

All I can say is stay true to your needs, don’t push yourself for the sake of others, be as open as you can, try to explain as much as possible, and -- if only a little -- give them some leeway; they’re only human too.

Cover Image Credit: Shutterstock

Popular Right Now

An Open Letter To The Meadville Medical Center And Its ER Staff

When did kindness become a deserved thing in the healthcare field; and only if you're not on drugs?
14438
views

Yes, that cover picture is me, coming off a ventilator...at Magee Women's Hospital in Pittsburgh, a two-hour drive from my house, not at Meadville Medical Center.

This is very difficult to write. We live in a small town, and you are the only hospital for over twenty miles. In fact, I live so close to you, that I can see your rooftop from my back garden. I can walk to you in about ten minutes if it’s not overly humid out. The Life Flights pass over my house as they arrive at and leave your facility, and my young daughter and I pray for every one of them.

My daughter had to call an ambulance on May 30th, as I had a sharp and horrible pain overtake me so suddenly, that I thought my neighbor (who I threatened to report for dealing drugs) had shot me through the dining room window at first. There was no blood to be seen, but the pain was so severe, that combined with the cold sweats and dizziness, I was genuinely afraid I was about to die.

I can’t express in words how proud I was of my girl as she explained to the 911 operator what was the matter and where we lived. She was brave and helpful as they took a blood sample, handled what I later learned was a seizure, and kindly got me into the ambulance from my difficult entryway. She called her Auntie and calmly told her to meet me at the ER. And while memories of the horrible experience I had in your ER twenty years ago still haunted me, the care and attention the ambulance drivers showed me encouraged me that I would be okay.

If only.

There were so many people, and I was half delirious with pain and inexplicable symptoms. Thank God my sister in law, Sheri, was there to help me fight for my life. For the sake of our small town and six degrees of separation, I will call them Nurse A, B, C, and D, and Doctor H. Your staff literally, unapologetically bullied me within an inch of my life.

When I arrived, it was apparently Nurse A who triumphantly announced to everyone involved in my care that I was on drugs, case closed. Despite Sheri and I repeatedly telling them that I hadn’t taken any narcotics, and I won’t take anything stronger than Motrin 800, they persisted in asking what I took. At one point I heard Sheri saying, “She does everything naturally, you're wasting time.” No one cared.

When Nurse A informed me that they needed a urine test, I told her to straight cath me, as I couldn’t stand up. It was Nurse A who told Doctor H that I faked two seizures on the way from my house (I am still amazed by her mystical powers that she could surmise this), and insisted again that I was faking everything. With utter disgust Doctor H said, “She can stand, get her up.” At Sheri’s protest, Nurse A reiterated, “If she can move her legs she can stand.” My legs, which were almost involuntarily moving to find relief from the pain in my abdomen, gave out on me when she insisted I put myself on the bedside commode. I passed out again and urinated on her.

When I woke up to Sheri frantically calling my name, I was greeted by an absolutely disgusted Nurse A, who complained that she needed to go change her clothes, and rolled her eyes at my faking another seizure. She informed everyone who came in next that I was faking these symptoms, and four attempts to straight cath me failed. In that moment, I was sure I was going to die.

Everything after that came in blurry and fragmented vignettes, like an awful out of body experience. There were Nurses B through D or more, all repeatedly asking me what drugs I took. Everyone scowled and frowned, passing on the information that I was faking everything. There were four of these nurses when I woke up on the way to a scan, and all but one asking me what drugs I took, and telling me to stop faking as I hysterically screamed that I could not breathe when I lay flat. I was terrified, confused, out of my mind, and unable to breathe when I lay flat, and they reported that “she hyperventilated herself” in the scan lab.

All the while, Sheri valiantly insisted they would find no drugs in the blood work, and that I probably hadn’t been to a family doctor in years. I lay in your ER cubicle and reconciled myself to God, convinced that I was going to die and be labeled a drug addict.

At some point, something shifted, and suddenly I received the blanket I had asked for hours before. Apparently, my temperature had dropped so low, their fancy thermometers couldn’t read anything. I remember a young man trying to find a vein and saying, “Oh my God, I’ve never seen anything like this. I’m not trying again.” My head was elevated, and the panic of not being able to breathe alleviated somewhat.

Suddenly Doctor H was almost kind, and I heard him telling Sheri something about “a mass” and “blood in her abdomen” and how some other hospital was better equipped to help me. She told me she okay-ed it, and I recall telling her, “I trust you. Just get me out of here.”

In fact, knowing someone else would care for me gave me such peace, that I literally lay completely still as an older man inserted an IV line into my neck with no anesthesia.

We assume the blood work came back and the scan verified what we desperately tried to tell everyone from the beginning; I wasn’t on or seeking drugs. But there was no apology from Nurse A, her fellow nurses, or Doctor H. I may be corrected, but I spent five or six hours in your ER defending myself to the same people who should have been fighting for my life.

As I lay there, talking to Yeshuale, three people in what looked like tactical suits came alongside my bed. The first was a woman who looked like she was speaking into a walkie talkie. Behind her two men. I thought to myself “Oh, state cops. I guess I’m just going to die in prison.” I was so out of it, confused and weary of being asked what drugs I took, I believed your ER staff had called the police and they had come to take me away. All I could think of was what would become of my young daughter.

Thank God, I was mistaken. The blonde woman wasn’t a police officer, but part of the helicopter team, on the phone with Magee in Pittsburgh so she could begin administering blood to me. Blood. Something your staff considered less important than accusing me of using and seeking some weird drugs. Behind her, a tall, blonde man smiled at me and explained that he was taking me in a helicopter and I would be fine. It was like hearing from an angel, and I remember saying, “Todah, Yeshuale!” repeatedly in my head and in a whisper. “Thank You, Jesus!”

Four blocks away, my daughter and the friend she was staying with waved as we flew over my house.

To my surprise, I woke up two days later, attached to a ventilator, one of my sister friends sitting beside my bed. I learned that I’d had two masses in my uterus, which tore itself open and bled into my abdomen. I’d lost four liters of blood and had a transfusion in the Life Flight. When they took the vent out, (my friend took the picture above) I made a joke about being a tough Jersey girl as I signed to the ICU nurse, but inside I was an emotional wreck. Still, as the days went on, I determined to treat everyone with kindness, and was treated the same way at every turn.

Kindness. The one thing I never received from your staff.

What was so special about me that your staff felt interrogating me about my apparent drug use was more important than helping me? My address? Because for some reason all the drug dealers in town seem to want to take over my block? So, we’re all on drugs, then? Do you realize that half my neighbors brag about going to your ER to get pain pills, and how easy it is? I never asked for anything but a Tylenol, and that was on the Life Flight. So, again I ask, what made me so unique?

And, I must say, it’s not even that your staff didn’t believe me. They were mean, hateful even. Rolling their eyes, talking about me like I wasn’t there, saying everything I did was a ruse to get drugs. When did it become okay to treat anyone like that? How was it alright for your nurse to walk in and determine that I was on drugs? How was it alright for her to set the tone of disbelief, unkindness, and abuse? How was it alright for the doctor to allow this and roll with it?

Yes, I said abuse. When someone is screaming that they can’t breathe and you tell them to stop faking, that is abuse. When you berate someone, and accuse them of something to the point where they believe they’re being taken to jail to die, that’s abuse. When you refuse to give someone a blanket, hold them down to the point where they’re bruised, that’s abuse. When you waste time to the point where an ambulance won’t get to the next hospital fast enough… that’s abuse. Your staff verbally, emotionally, and physically abused me.

Not only were they abusive, but they were comfortable with it. Your staff was comfortable with it, and didn’t care what it would cost me or my family. All but one nurse, who Sheri now tells me insisted that there was something wrong with me and took me for the scan. That nurse saved my life. People are comfortable with abuse because they get away with it. Abusers get smug, arrogant and even careless, because those they abuse say nothing. Your staff was smug, rude and uncaring to the point that they displayed a sick sort of disgust for me that was completely obvious. My sister in law later confirmed to me that it wasn’t all in my head.

At what point did this behavior become acceptable? Is it because you’re the only hospital for a 30-minute drive?

And, so what if I had been seeking drugs or high on some unknown concoction? Would that have made it okay for your staff to treat me thusly? Would Nurse A have been justified in declaring my altered state and treating me like garbage? Would Doctor H have been justified in how he treated me? When did nursing and healing give anyone that sort of power? When did people cease to be worthy of kindness, quality health care and gentleness based upon their drug use, or the address they live at?

When did you decide who deserves to be treated with dignity and respect and who does not? When did your medical staff earn that right to decide also?

If we’re completely honest, most of the people I know who abuse pills go to your ER at least once bimonthly to get refills. Your ER physicians pass out opioid scripts like candy and then mistreat the people they’re supplying? Thanks to you, I must hide the pain medication I loathe to take now, because someone will surely break in to my home and steal them if they know I have them. You, and other hospitals like you, are feeding addicts and creating innocent bystander victims like me, but that’s another conversation.

This is difficult to write, because you have your hooks in all over this town. This is difficult to write, because the trauma of that night is still fresh in my mind, and I often cry when I think about it. This is difficult to write, because the reality that I have had to now teach my child to ask any ambulance we ever need to call again to take us to Erie shouldn’t be necessary. This is difficult to write, but it needs to be said, especially since I’ve been finding out that I’m not the only person this has happened to.

You need to address these issues. You need to stop handing out scripts like promotional coupons, and perhaps you won’t have nurses and doctors assuming everyone’s on drugs or seeking them. You need to discourage the abusive and toxic behavior of your staff, and hold them accountable when patients complain. Let me put this into perspective for you: I’m pretty sure Nurse A is the same age as my oldest daughter, and my child would eat mud before she treated anyone like that. Why? Because my kids were never allowed to behave that way in the first place, but to stay on topic, she grew up with consequences, and as an adult still recognizes their severity.

As the events of that night become clearer to me, and I continue my peaceful, miraculous recovery at home, I am determined not to hold on to bitterness about what happened to me at your ER. I am determined to make the most of the second chance at life I’ve been given, and leave your abusive staff in the past. I’ll probably pass some of them in the super market, or sit behind them in church, our town is so small. And while you and your toxic staff will cease to haunt my future, I will surely haunt yours. Nurse A, Doctor H, and Nurses B through whatever… will never forget the night the woman with the blue hair nearly died because they were too busy wrongly judging to actually care.

I am determined to walk out the rest of my life in kindness, the very discussion I had in a blackout with God while your nurse accused me of faking a seizure. I will pray, hoping with all hope that kindness will once again be requisite for employment in your ER and every area of your corporation. Believe me, it’s possible and good for profits. The entire time I spent in Pittsburgh at Magee I never encountered a single unkind staff member from the surgeons to the housekeepers.

I know you can do it.

Cover Image Credit: Heidi Owens

Related Content

Connect with a generation
of new voices.

We are students, thinkers, influencers, and communities sharing our ideas with the world. Join our platform to create and discover content that actually matters to you.

Learn more Start Creating

Public Health May Be The Most Important Area To Focus On As A Society

I saw with my own eyes the importance of public health initiatives in villages throughout Honduras and Nicaragua.

287
views

Medical exploration and healthcare management has thrived throughout the 21st century, with major developments in epidemiology allowing organizations such as the World Health Organization of the United Nations to track the spread of preventable diseases such as malaria and influenza across impoverished countries worldwide. I saw with my own eyes the importance of public health initiatives in villages throughout Honduras and Nicaragua when I traveled there as a Brigadier with Stony Brook's Public Health Brigade, a coalition organized by Global Brigades during the Summers of 2016 and 2017.

Working alongside other university collaborations such as Boston University, I was mesmerized by the impact that improvements such as clean water through mountain pipelines and sustainable housing could do in reducing the severity of Zika virus outbreaks in the region, as accentuated by the near 8,400 villagers with access to clean water as a result of our efforts.

These experiences demonstrated to me the value of preventative measures highlighted by the public health approach — by attacking the origin of a disease and the medium through which it spreads instead of merely treating the manifestation of its symptoms, a holistic approach would allow for the eradication of a malady throughout an entire region whilst educating the local populations about the importance of proper hygiene practices and fortified infrastructure to prevent its re-eminence. It is for this reason that I feel inspired to pursue a graduate degree in Public Health as a professional, so that I can help contribute to the eradication of preventable illnesses across the globe.

A specific area of interest that I wish to target as a field of study would be the impact of sustainable housing in the eradication of illnesses such as lead poisoning through contaminated water sources. My own experience in this particular aspect of Public Health Administration as a Brigadier with Stony Brook Public Health Brigade showed me the importance of secure infrastructure in the reduction of preventable diseases as an especially pertinent area of community health in the United States, highlighted by the water toxicity crisis in Flint, Michigan.

A recent study released by Dr. Mona Hanna-Attisha at Hurley Medical Center noted an uptick in the blood-lead concentration of Flint Children from 2.4% to 4.9% after changing their water source, with spikes as high as 10.6% in correlation with elevated levels of lead in Flint water. These elevated blood-lead concentrations put these children at higher risk for lead poisoning, characterized by reduced growth rate and learning difficulties. Purification of the available water sources throughout the region would be a comprehensive long-term solution to reducing elevated blood-lead levels amongst Flint residents.

My goals after my master's degree in public health would be to pursue a medical education and become a doctor, or go into Healthcare Administration and eventually work with the WHO of the UN to establish a more easily accessible Healthcare system across various countries to increase the number of people in impoverished areas that can be reached by doctors, nurses and other primary care practitioners. I feel that a proper understanding of public health would, therefore, be essential to establishing my career in service to humanity.

Related Content

Facebook Comments