Who am I? Why won’t I speak up? Where’s my voice gone? Why the tears?

This is what was running through my head so many times as I lay in a hospital bed. 

In the early years of MS relapses and hospital stays, it felt like the real me. The one that was getting promotions at work, facilitated week-long training sessions and enjoyed public speaking had lost her voice. Her ability to speak up when things weren’t right.

Instead, I fought back the tears or quietly let them roll down my face as I felt lost and uncertain how to regain my power. My voice.

 
Not surprising, though, as in a hospital, you’re feeling emotional and vulnerable. Thrown into a sterile environment. Sometimes unexpectedly. Surrounded by strangers. Being pumped with drugs. In pain. Nauseous. And you are affected by brain fog. You do not feel like you.

Before I share more details I want to pause for a minute. As sharing these experiences is not about taking away from the incredible work medical staff do for us. They work tirelessly to help us recover. I’ve had countless amazing experiences.

Rather, I want to highlight that when you’re in an emotional state as a patient, comments that would otherwise not even register as upsetting, in fact, may even earn a wry smile, can cause distress.

In a Q&A with my current neurologist and medical students, I said "When lying in a hospital bed, we are hanging on every word you say. The way you communicate, and the words you choose, have more of an impact than you realise”.

Part of living well, and recovering in a hospital, is about maximizing the relationship patients have with doctors and nurses. And good communication between us all is the key.

Three experiences where I felt powerless in a hospital bed.

But on reflection, they created great insight into how we can emotionally empower ourselves during a hospital stay.

Experience #1

I still can’t believe a comment about me eating chips (or crisps) brought me to tears all those years ago. A good example of me feeling really sensitive and emotional.

Prednisolone. At times a miracle drug. Being wheeled into a hospital ward and then five days later walking on out of there. But if you’ve had this infusion, the side effects can be horrendous. I would always puff up, have a horrible metallic taste, and suffer extreme nausea.

One night I overheard the nurses doing a handover at their station. They discussed that they needed to monitor my high blood sugar levels. A nurse said, “What does she expect. All she does is eat potato chips all day”. I couldn’t stop crying. I had felt nauseous all day and a pack of chips settled my stomach. I wanted to press the buzzer and say, “I can hear you”, “Read the packet. There is no sugar in the chips”, and “This is what settles my stomach and stops me from throwing up”. But I stayed silent, and the tears rolled down my face. I was hurt as I thought this throwaway line meant that these nurses didn’t appreciate how tough getting through this relapse was, and how much I was doing to stay well. I couldn’t stop crying.

❤️ Have the inner confidence not to worry about the irrelevant comments others make.

Don’t worry about what others think of you. Who cares what people think? Brutal, but true. I knew eating these chips would help me cope with nausea, and I was doing all I could to regain my functioning. Plus, the chips had nothing to do with the blood sugar levels (I checked with my neurologist just to be sure!).

Experience #2

Time to try blood plasma replacement procedure. It didn’t sound pleasant, but the steroid treatment didn’t work with this particular relapse. I still couldn’t wriggle my toes, let alone move my legs. My neurologist wanted to try another type of treatment to get me mobile. There was a really friendly, but not so gentle, nurse on the ward. The needles hurt! I felt sick when wheeled into the treatment room, and she was there, alone. Her words provided no comfort. “I’ve never performed this procedure by myself before. But let’s see how we go”. She missed the vein and the fluid started pumping into my arm. Panicking, the buzzer was pressed, and a doctor came rushing in. The pain was excruciating.

❤️ Listen to your intuition, don’t ignore that sinking feeling when something doesn’t feel right.

From the moment I was wheeled into the treatment room, I knew the procedure wouldn’t end well. But I said nothing. I should have asked to speak to the doctor before the procedure commenced, but I was too worried about hurting the nurse’s feelings. It’s okay to put your wellbeing first.

Experience #3

A registrar and consultant were chatting about me at the end of my bed. They concurred that the relapse I was having was extremely aggressive, but “at least she can use her hands” and “she’ll be able to use a computer for work still.” I felt sick. Did that mean they didn’t think I’d ever get out of a wheelchair? Was the damage to my spine permanent? I stayed silent, not alerting the doctors that I was listening to every word.

I would have three long days before speaking to my neurologist. Although he agreed that the relapse was aggressive, he said it was too early to tell whether the damage was permanent. To not give up hope.

Two lessons learnt here!

❤️ If medical staff are talking about you, ask questions so you are included in the discussion. 

If the discussion concerns your wellbeing, it is important that you are actively involved in the conversation.

❤️ Always discuss any concerns with a doctor that knows you and one that you trust.

In a hospital, you meet so many different medical staff, who don’t necessarily know your history. If you are concerned always speak with your own doctor, as it is their opinion and prognosis that matter most.

A funny ending to the story. Months later, I was presented as a case study in front of a room full of neurologists. I was out of a wheelchair and standing in front of the room with a walking stick. I think those two same doctors put their necks out as I walked across the stage! My neurologist was not as surprised.

4 Ways to Empower Yourself from a Hospital Bed 

In summary

Lying in a hospital bed is disempowering. At times you lose your voice. You are unable to stand up for yourself. You become a different person from the one that is healthy and confidently navigates through challenges outside the hospital walls.

But, next time you are in a hospital bed and feeling really emotional, use these 4 ways to empower yourself:

• Have the inner confidence not to worry about the irrelevant comments others make. 
• Listen to your intuition, don’t ignore that sinking feeling when something isn’t right. 
• If medical staff are talking about you, ask questions so you are included in the discussion. 
• Always discuss any concerns with a doctor that knows you and one that you trust.  

Hospital stays are stressful. And so is having medical tests. Don’t worry I’ve also got some insights that will help you to navigate these as well: How to empower yourself to cope with the stress of medical tests. 

Did reading this blog spark any memories from your own hospital experiences? I would love to hear your story! Email me to share: [email protected] or DM me on the Hurdle2Hope Instagram page xo