We are thrilled to present this post from Lauren Vandal of Braingirl and Next Doors Cat
BY: LAUREN VANDAL
When my brain injury happened just over two-and-a-half years ago years ago, I never expected the next 30 months to involve so much suffering, learning, pain and discovery. It still astounds me when I look back over that period and see how much I’ve endured. Throughout most of it I’ve had support from various health and social care professionals but the journey hasn’t always been smooth or easy.
I live in Northern Ireland which is classed as part of the U.K. so thankfully there is free healthcare known as the NHS. I am thankful on a daily basis for the help I have received, from life saving brain surgery to psychology to occupational therapy and everything in between (regular GP visits, blood tests, hospital appointments). When I hear of how some of my new-found brain injury ‘family’ are struggling over-the-pond to access good healthcare and disability benefits, I’m even more thankful.
There is lots of help available through the NHS but this is where the joined up thinking loses its way. I’ve had to work for all the help I’ve received. There are gaps in service (which seems to be universal, not just an U.K. issue) which if handled correctly could make a huge difference to someone’s recovery. For example, I was discharged from the neuro ward with no information. None. At. All. I didn’t know what had happened to me, I didn’t know what was to come and I didn’t know of the resources available. I struggled with what I was going through until a rather clued in GP referred me to something called the Community Brain Injury Team and it was through them I could access everything I needed.
There seems to be no set protocol for discharge from hospital in the U.K., some people get sent to the neuro rehab unit and the natural follow on from there is community support. Some people, like me, just get sent home and have no idea what to access. Now, admittedly, I was presenting well with no physical deficits, so no rehab unit for me. But why we weren’t informed of community help, I’ll never know.
There are a myriad of things that can go askew with your body after a brain injury but there are no automatic procedures to test the common issues and you have to wait until you feel like you’re losing your mind before things get investigated. Even then, medication for depression is suggested before investigating things such as hormone levels, pituitary gland function or simple vitamin levels.
To get through brain injury you have to educate yourself, find out what others experience, and find out how ABI can affect your body. Before you take any medication, vitamins or other treatments MAKE SURE other things have been checked. Brain injury is a mystery, no one can really tell you how it will manifest or how it will heal but you are entitled to as much care and follow through as other serious health conditions receive.
I met another brain injury survivor last week who told me she has received no help at all through her struggle and was informed that if she’d had a heart attack that the system is there for that, the support, the follow through and the knowledge. I’m not saying our GPs are not skilled and wonderful because they are, but more info is needed on brain injury. There have been times where I’ve presented distressed at appointments and just been shrugged at, literally. This doesn’t sooth me or help me.
So this is where my veracious appetite for reading and knowledge saved me because I go armed with that to each appointment and use it to help me. I sometimes feel like a nuisance but at least I know I’m getting on the right track. I’m now finally getting the right tests done and can see the light emerging. I’ve also just recently moved house and got a new GP who completely knows his brain injury onions and this makes for such a good relationship.
So yes, I can relate to your struggle wherever you are in the world. Please keep searching, digging, connecting, reading and looking for that health professional who is on your team. Do not take no for an answer, this is your health and if you feel something’s ‘off’ it usually is. Brain injury is truly a silent epidemic. This is not an easy ride. You need strength, resourcefulness and tenacity above and beyond the norm. But little-by-little, piece-by-piece you come back to your body, to yourself, a little bit skewed, a little bit ruffled, but you eventually inhabit your new self and start to learn to live again.