Coffee with Esther (November 2023)

Feeling Invisible

Hi again,

After a month’s holiday, we re-started up the Virtual Coffee Breaks in October. I wouldn’t call surgery a holiday, but I needed the break after it. We all said how much we’d missed the connection that we’d built up with our fellow sufferers as most people around us in real life do not understand our condition, making us feel very invisible.

Myelopathy is such a frustrating condition. Most of the symptoms you can’t see. You can only know what it feels like to have myelopathy when you suffer from it. From dizziness and blurred vision to balance issues, every day you feel something different. I don’t think I’ve ever had two days the same. As I’m writing this blog, my hands are numb, my dizziness has increased, and I have a burning sensation in my legs and stabbing pain in my shoulder blades. I have to write a bit, then rest, then do a bit more. And if I don’t pace myself, my loving myelopathy starts sending electric shocks down my arms. Everything we do makes us fatigued. It’s so annoying!

How could anyone around us understand what’s going on inside our bodies? It’s an invisible condition! It makes you feel invisible!

Unfortunately, it’s not just our friends or family that don’t understand our condition. We seek reassurance in the medical sector, only to be looked at, stared at, and then told, “Oh, myelopathy can’t cause those symptoms”. All because the person in front of you may not understand the condition or, even worse, doesn’t believe in the disorder.

There is so much more research needed for myelopathy. They don’t understand how we feel when they keep suggesting going to different departments – starting from the neurosurgeon, then onto the neurologist, and onto the pain management team – after stating there is nothing more they can do.

How are we meant to get help and support when a lot of the medical personnel working in these departments struggle with the knowledge of this condition?

We feel unheard and disbelieved. We feel invisible.

Well, we can do our bit. Every time you meet a new medical professional, give them the data from this website in the Professionals section. I also have a printout that I give them, which is available for members of the Support Group on Facebook; under the Files section, scroll down to Cervical Myelopathy_Handbook_1.

This can help them to understand the condition better. It’s something we all need to do, so we can get everyone to learn more about myelopathy and raise awareness. From your GP to nurses or even your physical therapist/pain management team, talk to them and give them a printout, or even this website address. If we all started to do this, we’d be playing a big part in getting this condition noticed and understood.

It is so hard day to day, living with myelopathy. We start to feel invisible. Unbelieved! And when you feel like this, it can cause more problems, like depression or anxiety. If we all start defining myelopathy for others, we begin to have a voice and be seen!

Another area where we struggle to be heard is with the Benefits Office. If only they understood how it affects us on a day-to-day basis. You try to explain to them but it’s difficult as, whilst the condition is quite common, it is not well understood and is underdiagnosed. They only go by what their guidelines state; we’re like a round peg going into their square boxes. They just don’t understand what it’s like to be living with myelopathy. If only they could experience what it’s like to have numb fingers and cold and burning hands. To walk with your head feeling dizzy, trying to get through the day without feeling exhausted. Your legs not walking straight. Plus, in my case, (and quite a few other sufferers), living off a liquid diet until they decide how they can help you eat normally again.

That’s why the research and studies are so important. These will help us make us more understood.

So if you’re feeling invisible, if you feel you need people around you that understand you, and the condition, then please join the Support Group on Facebook, or the Caregivers Support Group for your family and friends. There you will feel understood and get the support you need. At our Virtual Coffee Breaks, you can meet people face-to-face online, make friends, and ask any questions you may have. We talk about whatever you need to talk about. We are there to make sure you don’t feel invisible and to be seen and believed!

Let me share some dates for the Virtual Coffee Breaks so you can pop them on your calendar:

  • 16th November at 6 pm GMT
  • 30th November at 11 am GMT
  • 7th December at 2 pm GMT
  • 14th December at 6 pm GMT

To join the Virtual Coffee Breaks, please make sure you are a member of the Support Group on Facebook and click on the links to the Coffee Breaks.

I hope to see you there.