When you have IBD, your immune system is attacking the healthy cells in your body. It’s a full on internal battle going on inside, and sometimes it’s a war.
When I feel relatively healthy I find it much easier to manage my emotions aswell as being more equipped to be deal with life in general. And as such as generally don’t need as much intervention from my healthcare providers.
That being said when things are not going well with my IBD, for whatever reason, I find it incredibly difficult to access the services that I need, aswell as knowing who the first port of call is (GP, IBD nurses or Consultant?)
Also when I’m in a flare or experiencing other symptoms I don’t always have the energy for a battle on my hands to advocate for my health.
I am incredibly grateful to have such a thing as the NHS, but it does feel like a real chore/hardwork to gain access to anything. I either have to make numerous phone calls, or things don’t get actioned or I am made to feel like an inconvenience or a liar. Tests take forever by which time I could be well again.
I often feel like I’m a loose end or simply forgotten, like my quality of life doesn’t matter and I am just a number & a statistic.
I only contact my healthcare team when I need to, not when I’ve banged my big toe, for when I am genuinely struggling to deal with things on my own.
So why does it feel so difficult?
I appreciate this post may seem like a bash and I understand that we are in a pandemic. But it has been many experiences that leave me feeling exasperated some times.
We have such a great assett here in the UK, but it could be so much better.
Anyone else sometimes feel the same way? why not drop me a comment