10 Ways to Empower Yourself While in the Hospital
I have just come out of my third stay in the hospital this summer. It sucked, but there have been many things I’ve picked up along the way that helped empower me during my hospital stays and made them suck a little less.
1. Get friends to bring you food
Hospital food feels far from fresh or nutritious. Ask friends to bring snacks/fruit/etc., and (if you can) full meals from time to time. You may have access to a patient fridge that you can store things in, if needed.
If you can’t eat, request nutrition drinks (I recommend getting the chocolate flavor – the rest are gross!). It’s so important to keep your strength up, even if it’s the last thing you feel like doing.
2. Do your research
Talk to friends/friends of friends/trusted health professionals about what’s going on. Get a friend to help you research (stick to scientific papers/research-based articles if using Google!), if reading is difficult or you feel overwhelmed by all the information, which often I found I was.
It’s so empowering when you are able to meet the doctor in discussion, rather than feeling lost or helpless.
3. Get a friend or advocate to sit with you during doctor rounds
I could write a whole article just on the power imbalance that often happens within hospitals. I dreaded the doctors round every morning in the hospital. Some doctors were amazing, but sadly I felt patronized and unheard by a lot of them.
It can feel so intimidating having up to five or six doctors around your bed with just you to fight in your corner. So, get a friend to be there with you, and/or ask some of the extra doctors to step out if you need to — explain you feel more comfortable with just one or two there.
Often doctors rounds happen outside of visiting hours, so ask for an approximate time they will visit and plan for a friend to be there. In some hospitals there may also be an advocacy service. If they don’t have this and a friend can’t be there, ask for a nurse to be there during the rounds, instead.
Just the presence of someone there for me helps me feel stronger in my rights and opinions, and improves my ability to voice my needs.
4. Make notes of what the doctors say
Keep a record of each daily visit and what results they’ve told you, or the tests/services doctors say they’ll do. Get proof of referrals/follow-up appointments they said they’ve made. I was told both referrals and follow-up appointment had been made, but upon discharge from the hospital I discovered they had either been done incorrectly or not at all.
I also generally had a different doctor every day, and they would often say something different than the doctor the previous day. Often suggested tests wouldn’t get done, or results would get confused. Chase things up if they haven’t done what they said they’d do, and don’t be afraid to correct them if they get something wrong.
5. Call the patient complaints line if you need to
In June, while in the hospital, I needed a catheter for the first time because I suddenly couldn’t pee on my own. On the day of discharge, the doctors realized I hadn’t seen a urologist during my stay. This was a mistake — the doctors acknowledged that they thought they had done it. I requested to see one before I was discharged, but they told me to wait six weeks for an outpatient appointment instead, despite the urologist being literally around the corner in the hospital. So, I phoned up the Patients Advocacy and Liaisons Service, and explained my situation. Within half an hour, a urologist came to see me. There may be a similar service at your hospital.
6. Ask for help from friends/family
Tell people what’s happening: people want to help. The hospital was rubbish, but the love and help that came from my friends was amazing. People really showed up, and they couldn’t have done that if I hadn’t communicated what was happening.
If the idea of asking for help makes you squirm, get a friend to set up a WhatsApp/Facebook message group and to pass on messages of what you need, for you.
7. Count the blessings
I usually hate sentences like that, or the suggestion of gratitude practices when things really suck, but while in the hospital, I kept finding my mind drift to the amount of people who loved me and were offering support. It really helped bring perspective and remind me that not everything in my life was rubbish!
I often felt overwhelmed by everything feeling bad when in the hospital, especially because I was dealing with a seemingly endless and undiagnosable (at that point) health issue, but moments I remembered all the love that was coming into my life from my friends, or the people I knew who I was able to ask for help and support with what was happening in ways doctors were failing to help with, I gained perspective and felt held and loved.
Gratitude should never be a replacement for feeling frustrated or sad, and I hate when it’s suggested that way, but when it’s felt alongside that frustration and sadness, it can offer perspective within a time that can be overwhelming and hard.
Sleep as much as you can, and get decent earplugs. Hospitals are so noisy, and this generally doesn’t dampen down much at night time. Plus, you are always woken up so freakin’ early…
I made up for any sleep I missed at night by sleeping during the day. We also need to sleep more when we are healing!
9. Take in entertainment and distraction
Bring your own (or borrow a friend’s) iPod, laptop, phone, magazines, books, coloring books, drawing materials…
Music, films and audiobooks can be healing balms within noisy wards.
10. Get all your test and scan results printed out in detail when you leave
Take them to other health professionals you see, or look at them yourself because they can be a good insight into what is happening in your body and what needs to be looked at in more detail. For example, I’ve found that often the NHS’ “normal” ranges in blood tests are so wide that your results can still be high or low, they just fit within the “normal” range so it doesn’t get flagged.