Tips for Surviving a Hospital Trip When Chronically Ill
When you're disabled - the decision of whether or not to go to the hospital is incredibly complex. When you have no choice but to go - there are ways to make it easier.
I recently wrote about chronic illness and grief - as well the stages of deciding when to go to hospital.
It was disheartening (though not surprising) that so many disabled people are at the “I won’t go unless literally dying” stage. Reading people’s responses and seeing how many are rightfully terrified to go to the ER caused my original post to morph into a series on how to cope with chronic illness and needing hospitals. Consider this Part 2 - how to make ER and hospital trips easier.
When you’ve dealt with chronic illness for a long time - you learn not to go to the ER unless you think you might actually be dying (and sometimes not even then). You learn to endure unimaginable amounts of pain and suffering without medical care.
Unfortunately - sometimes you absolutely HAVE to go. Whether that’s because you might be dying - or because someone has called paramedics and taken the decision out of your hands - the reality is ER trips are easier to handle with a bit of preparation.
First things first - have a “Go bag”. This is a bag you keep handy for any emergency hospital trips. Mine is stocked with extra medications, bottled water, chargers & portable battery packs, N95 masks, change of clothes/socks, my most recent EKG strip and a letter from my cardiologist. Comfort items like earplugs, eye masks and headphones to help drown out the harsh noises and lights of an ER setting can be a big help. If you’re on a special diet it may be helpful to bring a safe snack or beverage. I also include a list of all prescription medications and supplements and a list of all my doctors and specialists. I recommend having a list handy even if you know everything by heart - because you never know when you might lose consciousness and this information can be a huge asset to ER staff.
You also can’t predict how long you might be at the hospital and all the above listed items will come in handy. I’ve had my clothes cut off when I’ve been unconscious - and going home in a hospital gown was NOT a fun experience. Sometimes the ER doesn’t have my medications. Trying to sleep in a crowded ER hallway is nearly impossible without earplugs, and headphones have helped drown out the traumatic noises of people suffering through one of the worst days of their lives.
Bringing your own medications and supplements can help ensure you remain on schedule. Sometimes the ER doesn’t have my medications or are too short staffed to give me them on schedule. I noticed a reduction in the severity of post hospital crashes when I strictly adhered to my home medication schedule. Not all hospitals will allow you to take your own medications - but it’s worth asking your nurse if you can. ALWAYS make sure they know what you’ve taken and when. If they need to administer a medication urgently it’s critical they’re aware of any possible contradictions and interactions.
It’s also important to go in with the right expectations. Remember that the primary job of an ER is to rule out any immediate risk to life or limb and therefore they’re not equipped to manage chronic illness.
If you’re bringing documentation from a specialist - don’t expect the triage nurse to review it. Their job is to assess how stable you are and decide where you go in the queue - not to diagnose or treat. They’re not being dismissive - they will give the letters to the treating doctor for review.
Image Description: An ambulance is driving down the road with blurred lights to indicate high speed.
If possible bring an advocate. There’s still a lot of gender bias in medicine so it’s generally more helpful if you can bring a man. Having another set of eyes and ears in the room can drastically change how you’re treated - plus it’s helpful to have someone to watch your belongings, help you to the bathroom etc.
If you don’t have an advocate - consider phoning or video calling a friend. Ask them to remain on the line while the doctor is assessing you and providing the care plan. If that option isn’t available… ask the doctor if you can record the visit so that you can review the plan later. You need to be careful with this approach to ensure it doesn’t turn antagonistic - the goal is to make it clear that you need to record because you’re unwell and unsure if you can remember all the pertinent details. Not to ‘trap them’ in some way.
There’s also patient advocates in certain hospitals - and it’s your right to request they be present. You can ask for the nursing manager or even a chaplain if no one else is available. The important thing is getting someone else in the room to advocate on your behalf.
Know your baseline. This is SO important. Every test has a standard reference range and if you’re within the “norm” they often won’t look any further. Many chronic illnesses can skew these tests - so what may appear normal for a healthy person may not be normal for YOU.
If you know your baseline it’s easier to advocate for yourself if a test result is off. I suffer from Dysautonomia which is known to cause issues regulating body temperature. I’ve had a severe life threatening infection and NO fever. It can also cause paradoxical reactions in heart rate and blood pressure. When I was bleeding internally my blood pressure was actually higher than my incredibly low baseline. This knowledge could save your life.
If you feel you’re not being taken seriously - or if you’re being denied tests or follow up - you can consider asking them to clearly note your chart that they’re denying said care. I’ve heard this used with mixed results. It could be seen as confrontational so I recommend trying to read the room as best as possible before asking. It’s best if your advocate can ask on your behalf - let them be the ‘heavy’ so you’re not considered a difficult patient.
Above all else - remember that you know your body best. You’re the one who has to live in it and your gut will tell you when something is wrong. If you’re discharged without appropriate care and feel unsafe… please try and go to another hospital.
We hear far too many stories of disabled or chronically ill patients being sent home with a life threatening condition - and some don’t end up making it. The more complex the medical situation - the easier it’ll be to miss something. I’ve been there and almost died as a result.
It’s your right to keep fighting for care - and to use every available tool at your disposal. If you’re hitting dead ends reach out and ask for support. Leverage social media if there’s no one available in your life - there’s almost always someone online and we WILL try and help you through it.
Image Description: Two sets of hands clasped together. One is wearing a white sweater and one is wearing a black sweater.
If you’re a healthcare worker reading this - please have compassion for people with medical trauma and PTSD. Please recognize the barriers to care that exist for disabled and marginalized individuals. It takes a lot of strength and courage for us to go to the ER - please treat us with kindness.
This includes wearing a mask for us. Many disabled patients have made tremendous personal sacrifices to avoid repeat Covid infection - please don’t be the one who makes them sick. Don’t psychologize them for masking or label them “anxious” for trying to avoid infection. Remember that the ‘anxious’ or ‘difficult’ label can and does follow patients around and negatively impacts their care. Don’t use it haphazardly.
If you’re a chronically ill or disabled patient and scared to go to the hospital - it helps me to remember that healthcare workers are people too. They have bad days the same as the rest of us - and they make mistakes. Unfortunately the stakes are MUCH higher when they make mistakes which is why we have to be strong advocates for ourselves. That said - a mistake doesn’t necessarily mean they don’t care about you or don’t want to help you - and I’ve found it helps me to remember that.
At the end of the day we just want to feel better - and if we go to to the ER it’s because we’ve tried literally everything at home to improve our situation and it isn’t working. Going to the hospital is NOT a decision most chronic illness patients make lightly. We are looking to the doctors and nurses to help make us feel better - because at that point we can’t do it ourselves. A bit of empathy, understanding and acknowledgement that we’re the experts of our own bodies will go a long way.
Stay tuned for Part 3 ‘Managing Covid Risk While in Hospital’, Part 4 ‘How to be an Effective Advocate for a Disabled Patient’, and Part 5 ‘My Most Dangerous ER Experience and How My Advocate Saved My Life.’
I love receiving comments - if you have a tip or trick please leave it below. If you’re a caregiver or ally who accompanies a disabled individual to the hospital - I would love to hear how you make the visit easier for them!
I'm a type 2 diabetic who gets frequent foot infections (I've had all my toes amputated because of it) and I get gaslit often because of pain in my feet. I have neuropathy, so I frequently have to explain that my baseline for pain is really low, so if I feel any in my feet, there's a serious problem. What would feel like an 8 for example feels like a 4 to me. I literally have to be LIMPING to realize there's a problem.
As far as packing a go bag, I have a system for if and when I get admitted: Clothes (usually pajamas, underwear and a change of clothes to leave when I'm sent home), pads for if I'm on my period, my phone, my tablet, any chargers for those items, and since the food is usually pretty bland (I almost always get put on a low sodium diet) I pack a set of salt and pepper shakers as well. I also carry a couple fidget toys to keep my hands busy. I also carry a separate list of medications since wifi in hospitals can be spotty even though I have MyChart.
Having clear knowledge of your baseline and letting the healthcare staff know this is great advice.
I recently brought my mom to be admitted into the hospital for care (different than ER for sure) but establishing a rapport with the staff immediately always helps us. Connecting with them on some level so that they do see my mom as a whole person.
I have learned that I have to take a step back because I'm so on every little detail that it can be seem as untrustworthy. Trust comes hard for me in a hospital as I cared for my son when he had leukemia and many mistakes were made. Yes, they are human but that was my child. Momma bear came out often.
Daughter bear is often on the job!