#livingwith

In a changed global world that is getting harder for me to navigate, since my twin passed, I live with worry and continue to live with anxiety. Losing my twin is still early days, I need to be able to regulate my emotions better. My disability is also concerning, because I have no way of knowing how I'm going to age with it.

Eagle Syndrome

My twin was my safety net and now I have and deal with Eagle Syndrome, every day is a fight to stay well. I want to get into my life, and it's already been on hold because of the pandemic.

I have no idea about my physical disability as I age and the doctors don't know either. All I was told when I found out about cerebral palsy in my forties, was that as I age, brain cells would die and I would start to see physical changes. That uncertainty is a concern, a worry.

The thought of going through the ageing process without my twin is scary

Going through the ageing process without my twin is concerning. I don't know how that looks. I feel better for writing, for getting my thoughts out there, but even with my writing, I still have to get on with my life and that's where I can become stuck.

Living with worry and anxiety

I live with worry and anxiety, often feel overwhelmed and lost, not helped by the external decisions that have been made by the UK government. I can go to bed with worry and wake up to another day feeling lost and alone. Now with Eagle Syndrome, I literally have no idea on anything.

The neuralgia pain I have in my face, pain in my ear and my jaw brings yet more worry and anxiety. My twin was good at being able to find resolutions on illness. She'd know exactly what to do.

I normalise my thoughts, by writing about what I deal with on my blog. I take away the stigma. You would have to be asleep at the wheel not to be aware. Around disability and mental health, we more than most live with stigma.

When a person is labelled by an illness or disability, when others view them in a negative way because they have personal traits or distinguishing characteristics that are deemed a disadvantage, then you know you’re dealing with stigma; where what you deal with is ignored, where no one owns up to admitting they need to make you and your disability inclusive.

You know you’re dealing with stigma, when others fail to talk about, or bring what you deal with into every day. We can all change our perceptions, the way we look at something and as soon as we do, attitudes can change.

There are days where I struggle with certain aspects of my disability. I have reconciled much of what I deal with, but as I continue to present differently, I am stigmatised and that never goes away.

If something isn’t working, you seek to understand why, to change it through new perceptions. Those like myself with a disability cannot change how we view and see the world, but others can choose to help us see our lives differently, by talking about what we deal with and bring it into our every day.

We all have a role in society to help and bring disability and mental health into everyday situations so that those people living with something, feel inclusive, not exclusive. It is important mental health and illness relating to mental health are talked about, in families and society.

Having a mental illness or a physical disability needs to be normalised. It is wrong for others to ignore, label, or judge. As a society we need to get rid of the stigma associated with mental illness, disability, race and gender.

"Praxis Ortho Care Podcast Show" by

Dr. Sushal Shanthakumar, the Best Shoulder Specialist in Bangalore will exclusively live on Anchor.fm (23.04.2020) at 11:00 AM with an interesting topic "Living with Knee Osteoarthritis".