The problems encountered by chronically ill and disabled people during a hospital stay – Part 1
Lady, what is this clickbait title? I’m sure you are thinking that now, right? Hang around, read this piece and let me know if you still think that.
A hospital is a place where you go to when you are ill, so that you can be treated. So, by any definition, it must be for all sick people. In reality, hospitals are places designed for generally healthy people who get sick acutely or suddenly.
Even places meant for sick people, like hospitals, are made for abled sick people. The hospital building, organization, the people who work there and the medical system – they are all geared to treat a healthy person who got sick suddenly. Not a person who is chronically ill and has come to the hospital for an acute episode.
Everything is generic and automated, with little to no exceptions, accommodations or accessibility options. You will be asked to follow hospital policy, even when it causes you pain or discomfort. Any pain or discomfort you may experience shall be tossed out like a used tea bag.
What affects me most as a chronically ill person, when I am admitted to a hospital, is that I am a number, not a person. My autonomy is taken away from me completely. I thought I will list the things that have affected me, as a chronically ill person. I have also gathered some of these from a number of chronically ill people from the #NEISVoid twitter.
Lights: Let us start with something simple: lights. Lights will be on at all times with full brightness, until the determined bed time as per the hospital policy. Bright lights will not be dimmed, even if you are prone to migraines or are light sensitive. They will not even be dimmed when you are admitted for a ruddy migraine! I’m not even going to say anything about the sounds – just the thought of them will trigger a migraine.
Access: While most hospitals these days may have an entrance for wheelchairs, that may not be the case internally. Many hospitals do not have accessible restrooms or washrooms (although luckily this is not the case in the Netherlands). When you have to be moved from one place to the other, you are made to rely on transport staff/volunteers. They may only do it at their pace and not based on your needs. I was once made to wait in a wheelchair by a transport staff, who was standing right next to me. The reason was that the transport order had not come through in the system. I kid you not.
Medication: You have to tell the list of medications you take, no matter how tired or in pain you are. You may have to do this at least 5 times to different doctors and nurses. After all this, they will still mess up your medication list. Some hospitals have a policy that you have to take the medicines that they give, not your own ones. It does not matter that you have allergies or MCAS. The medicines will be given at a time that they are “supposed” to be taken, not at your regular time. Your calls to avoid certain medications, as you are allergic to them, may not be heeded. The exception may be kind doctors or nurses, who will keep an anti-allergen on hand. You will not be given saline and/or glucose infusion even if they give you energy to heal and recover.
Medications will not be given by infusion, even if that is the best option for you, if you can swallow them. In fact, there seems to be very limited (or no) options for people with dysphagia or other forms of swallowing problems.
Most importantly, medication may be stopped by the doctor without consulting with you or even informing you, but just by a note to the attending nurses or your file. You may have absolutely no say!
Communication: This is the worst of all things, when it comes to a hospital stay. You will not be told when the doctors will make their rounds or when blood will be drawn; when you will be taken for a test (even if you have to fast for hours before said test – I had to fast 20 hours once simply because they didn’t know when they’ll find a gap in the scan room for me).
If you keep asking when things will happen, people will get angry (either quickly or beyond a point). You can’t blame them, as they would probably not be told either.
There will be little to no communication between doctors of different departments. Same tests may be repeated because of this and blood may be drawn more than once! Your protests will simply be ignored, at best.
You may be asked by your nurse to take medications that a doctor discontinued during a ward visit, but has not made its way to the system.
Random doctors will see you, even if your doctor is in the same hospital. They will do the absolute very basic to get you out of the hospital, and will not explain what the heck they think is going on. You will leave with more questions than you had when you entered the hospital.
Be prepared to be perpetually anxious, frustrated, confused, angry, worried and dejected – all the at the same time and repeatedly.
Food: This needs a whole post on its own. Some hospitals do not allow patients to bring their own food. This is a horrible position to be in if you have a restrictive diet or have allergies or MCAS. You end up eating almost nothing and leave the hospital worse than you came in. It is a crime that hospitals don’t have nutritionists working to provide patients the nutrition they need. For instances, patients are invariably forced to eat gluten, even when they are severely intolerant (at least in the Netherlands). When hospitals do allow food from home/outside, it is restricted to specific times or once a day, which is not enough to survive well, especially not when you are sick!
Sleep: You will be woken up at all sorts of odd times, because the hospitals have set times for regular monitoring and the nurses cannot be bothered to let you sleep – either because the hospital is understaffed or they just don’t give a damn. This means you cannot hold on to your 9 pm sleep time because there will be a 10 pm check. Nor can you sleep until 7 am because the shift ends at 6.30 and the nurse will do a 6 am check before he/she/they leaves.
Mental Health: Even when you arm yourself with all the breathing techniques, anxiety tools and meditation in the world, your anxiety levels will peak up because of all the things listed above and more. That you may have a fear of needles or have anxiety may not even be a factor in how you are treated or addressed.
Any request that is out of the “ordinary” or normal course will get you a black mark and you will be deemed a “difficult” one.
Due to shortage of funding or just policy/attitude, many hospitals don’t offer psychological or pastoral services to patients who have been admitted. Even when there is a service of the sort, it is highly unlikely that you will be given one when you need!
I would like to write a post with solutions for these problems but that is going to involve a lot of research on funding and how to change systemic attitudes, so it has to wait. I will, however, write a post with a list of tools to survive a hospital stay, especially with tips for being your own advocate.
I am a burned out international lawyer & mother with Fibromyalgia and anxiety, trying to re-discover my identity.
