The Battles of Being Chronically Ill

Having a chronic illness or disability is not easy. You have to adjust to difficulties. Manage symptoms, pain, fatigue etc to name a few. Cope with physical disability. The inability of being able to do or access what you physically want to.

If that is not hard enough, the battles are just insurmountable. You have to battle, battle, battle for everything you need….and may I emphasise NEED not want! Whether it is for continuing health care, social care, wheelchairs, equipment, disability living allowance (DLA)/Personal independent payment (PIP), Employment Support Allowance (ESA) or support the list is never ending.

Why does everything have to be a battle?

My Mum says ‘You either pay in stress or money!’

The paperwork is continuous. Mountainous. Phone calls, emails, letters, forms, meetings etc.

I am quite bright so I understand most things regarding forms, battles etc. I am lucky my Mum helps me and does so much for me. Although it worries me as I could not manage to do it all on my own. I also worry for those who cannot not do it themselves. How do they manage? Are they getting the support they need? I can talk and be fairly assertive about my needs but it doesn’t ensure I get what I need. It often doesn’t make much difference. It leaves me thinking if this happens to me what about those who are less able to talk or communicate?

We are lucky we live in a Country where there is provision to supports disabled/ ill children and adults. It is just a shame everything is such a battle. It makes me feel like a second class citizen. Isn’t having life changing illnesses quite enough?
It is finding the strength to battle to have your needs met and being strong enough to carry on the fight. Those who can’t- suffer and may go without. It can wear you down.

Hannah x

For further reading you can check out my other posts – Disability Price Tag and Helpful Tips When Speaking to When Speaking to Wheelchair Users and Disabled People