Going to the ER as a Chronic Illness Patient (and how to improve the Situation)

I want to talk about a subject that every person with Chronic Pain is familiar with and probably dreads…

Going to the Emergency Room

There are several reasons why people with Chronic Pain in particular hate going to the ER.  Here are some of the top reasons that have been shared with me over the years.

1. Fear of Being Labelled a Drug Seeker

This is perhaps the top reason most people with Chronic Pain list when it comes to the Emergency Room. Even when you live with a sure diagnosis of a medical condition, if you arrive at the ER in pain for whatever reason, you run the risk of being labelled. This is especially true if you already take narcotic pain medications to treat your condition.

You can present with symptoms entirely unrelated to your chronic illness, but doctors still question you about your reason for being there. If you happen to show up with pain for a reason that’s obvious (a broken bone for example), you still have to deal with some measures of disbelief – it’s happened to more than one person I know. In fact, one friend was asked if she had broken her hand deliberately to get drugs. Scary!

If the reason for your pain isn’t immediately obvious, your risk for being labelled increases and you may even find your treatment to be slower than others around you. Doctors seem to believe that since we already live with Chronic Pain, we can certainly manage “a bit more” without issue. This is a long-held misconception that needs to be addressed in hospitals around the world.

2. Fear of Needing More Pain Medication

You wouldn’t initially think that needing pain medication would be an issue, but when you live with Chronic Pain, you’re probably already taking a drugstore’s worth of medication to manage symptoms and side effects.

Adding more pain medication to our bodies may help in many ways, but we tend to run the risk of more side effects than other people, thus adding to our stress. I happen to be sensitive to Morphine – I have problems breathing, and get severe body twitching, nausea and itching. While all those things can be treated with additional medications, why go through all that when Fentanyl works fine?

The problem with this is when I tell doctors I can’t take morphine and the reasons why, it makes me sound like a drug seeker, saying I would like Fentanyl instead. My requirements are legitimate but it can come out sounding very suspicious. Stressful!!

3. Fear of Being Out of Our Comfort Zone

I hate to go to the Emergency Room and will do everything in my power to prevent it, even living with increased pain, because of the stress of being out of my comfort zone – my home. I know I’m going to be subjected to sounds and lights that are difficult for me to manage in the best of circumstances.

I’m going to have to wait for long periods of time to see anyone, my treatment may be delayed if the doctor has concerns about my use of Opioids for pain management (see above), and my pain levels and stress are going to rise the longer I am there. This is in addition to whatever the reason is that brought me to the ER to begin with. I’m already stressed and these added things just make the whole situation more challenging.

4. Fight or Flight Reaction

If I end up with a doctor who doesn’t believe my pain is legitimate, my adrenaline or “fight or flight” reflex becomes engaged. I suddenly find myself having to defend my original illness, along with dealing with the reason I’m there to start with. I don’t want to get into a fight with a doctor if I DO need pain meds – I want them to help me by recognizing my need is real.

For this reason, if treatment is taking a long time, some people choose to “give up” and just go home to live with more pain. This then backfires when you truly can’t handle the pain on your own, and back you go, like a yo-yo. It reduces your credibility as a patient. Unfortunately, when you are treated badly by the ER doctors, it’s hard to sit by and put up with that. Stress increases again, and with that stress comes more pain…which causes more stress.

It’s a circle of misery that could easily be handled if doctors would stop and listen to us right from the start. Too many times, we’re not given the opportunity to speak up and share what’s going on once they find out we have Chronic Pain. You could have a broken arm with bones sticking through, but as soon as doctors hear “Chronic Pain”, they seem to harbour certain assumptions about you.

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5. Wondering if My Pain IS Legitimate

When you live with Chronic Pain for whatever type of condition, there’s a good chance you’re going to have multiple symptoms of your illness. If that illness is flaring up beyond your control and you go to the Emergency Room for help, you may question yourself on whether you really need to be there.

Sure, you live with pain daily, but is this so urgent that your doctor can’t take care of it in the next day or so? Well, it’s a tough call, but I’ve always believed that if you are in enough pain to consider going to the ER, you should probably GO to the ER!!

Now is not the time to second guess yourself. For example, I once experienced chest and jaw pain that was different from anything I’d felt before. I didn’t think I was having a heart attack, but the pain was unbearable and I knew it wasn’t going to respond to heat packs or ice packs.

It turned out I was having a severe and unusual reaction to a new Diabetes drug I had just started and I was hospitalized for 3 days while a bunch of tests were run, and then to let me rest on IV’s and pain medications. In hindsight, nothing bad would have happened to me if I’d stayed home, except I’d have been in excruciating pain for days. I would have gone to see my Family Doctor asap, but I’d also have put myself in misery for days that I didn’t need to be in pain.

By following my instincts, I received top notch care and was treated legitimately like a person who was in pain and needed help.

Ways to Improve Your Emergency Room Visit

There are several things you can do in advance to help improve your visit to an Emergency Room.

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1. Make Sure You Have a Regular Family Doctor

Even if your ER visit is for something completely unrelated to your Chronic Pain, having a regular Family Physician shows that you are dealing with your health on a regular basis. This helps to legitimize yourself as someone who cares about their overall health and is doing everything they can to help themselves.

What happens if you don’t have a Family Physician? In some countries, finding a Family Doctor is next to impossible. Attending the same Walk-In Clinic or Urgent Care Centre is the next best thing you can do for yourself, along with getting your prescriptions written by the same location.

2. Try to See Your Family Doctor First

If it’s at all possible, try to see your Family Physician before going to the ER. If you can, take a letter from the doctor with you explaining his findings and recommendations. This can help to speed up service in the ER (though it doesn’t always work).

Depending on the circumstances, this shows you’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.

3. Get Your Prescriptions Filled by the Same Pharmacy

One way to ensure legitimacy regarding your medications is to have them all filled at the same pharmacy. This allows doctors to do a quick search to make sure you’re not getting multiple prescriptions filled by multiple doctors.

4. Bring a List Of Your Medications with You

At a minimum, try to bring a list of your medications and dosages with you to the ER. If possible, take the actual bottles with you. This goes a long way to showing the ER doctors that you have legitimate health concerns, and that you know what you’re taking and why.

You might want to consider having a letter from your doctor on hand that outlines your Chronic condition and the treatment plan you are under. If you are going to the ER because of a problem relating to your condition, it can help to speed things up for the doctors if they know what’s been done in the past.

5. Co-operate with The ER Personnel

This may seem like common sense, but when we’re in a panic because of pain and/or injury, we tend to forget our normal sensibilities. Try not to become demanding when you get to the Emergency Room. You’re not the only one there and you have no idea what the other patients are going through.

Your pain or injury may very well be serious, but will be triaged appropriately according to the nurses. YOU might not agree with their assessment but without knowing the big picture, it’s impossible for you to say you’re the most critical person to be seen, even if you feel that way.

Work with the ER personnel, stay calm and cooperative and you’ll generally find yourself being treated respectfully by nurses and doctors who genuinely care about your health and well being.

Conversations with Emergency Room Doctors

For an excellent list of ways to communicate with the ER doctors to ensure you get quality care, this article from Practical Pain Management is a great patient resource. It provides you with things you should and shouldn’t say to make your ER visit most effective.

Speak Up!

I do a lot of Patient Advocacy volunteer work and was speaking at a conference full of doctors. I told them of being mistreated as a drug seeker at one Emergency Room I went to when the pain from my Atypical Trigeminal Neuralgia was overwhelming me. The doctors there assumed because I was in pain, pain medication is what I was looking for.

I wasn’t seeking pain meds (they wouldn’t have worked) but treatment in another form (I had the protocol written down from a specialist), so it was especially frustrating to not be heard.

One of the doctors at the conference spoke up and told me that on behalf of doctors everywhere, he apologized for that kind of treatment and said that it was unacceptable. He said that all ER personnel need to check themselves at the door before bringing in attitudes like that…his belief is that if someone presents at the ER in pain, they are there because they’re in pain. It’s up to the ER docs to determine if it’s physical or mental and how to best treat the patient, no matter what.

I was so touched by his comments…and I told him that the best thing he and everyone else in that room could do was to believe their patient. Yes, there are going to be drug seekers, but the majority of people who show up at the ER don’t want to be there, but have no choice. Believe them, listen to them and help them. It’s really that simple.

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2 thoughts on “Going to the ER as a Chronic Illness Patient (and how to improve the Situation)

  1. Great post. We should all be checking out attitudes/beliefs at the door! People have to start advocating for their health needs. Neighbour had swelling for months and blood work (nothing revealed), ER visits and finally admitted. Died. Wondering if she and/or family doctor had pushed harder if end result would have been the same.

  2. Just thinking about going to A&E again makes me itch, I think I’ll have to be dragged kicking and screaming if I need to go again. You’ve made such fantastic points. Even if you’ve got something a little more obvious (rather than a totally invisible illness) it can be damn difficult to get doctors or specialists to listen, believe you or do what you believe is the best next step. I took to having my stoma surgeon write a letter to tell the A&E nurses and docs what needs to happen when I go in with a bowel twist; I need IV morphine, and I nearly totally lost my sh*t when I went in, basically got ignored and told they’d get me some paracetamol when I was out of my mind in pain.

    Even when you’re being treated on the ward it doesn’t necessarily get any easier. When I went in this time last year, I had a doctor in a different speciality seeing me after I’d been in there 4 or 5 days and she told me to “lie flat, it’ll sort itself out”. The situation was bad, like ‘bad bad’. I said “you’re letting me die here?” And she just patted my hand and walked away. It took another doctor stepping up and getting another surgeon in, who said I was going to die if I didn’t get emergency surgery in the next few hours.

    I’m so glad there was that doctor at the conference that spoke up and apologised to you on behalf of all doctors – attitude is not necessary and sometimes, God forbid, they should perhaps just consider that patients may know bloody best!

    Fantastic post, Pamela  ♥

    Caz xx

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