Brain injury patient alert, what do you expect?

Life after a brain injury can be unpredictable, at best. Some days I’m on top of the world and you have to tell me to slow down, and other days I’m apathetic and lethargic.  I admit for the casual observer this is confusing, and difficult to deal with. But actually I don’t expect the public to understand, as until this happened to me, I can honestly say I didn’t either. It’s those who are in the medical/healthcare industry I get frustrated by.

Don’t assume I know where to go, and then answer in a tone that says “you’re an idiot” when I ask for directions.

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For anyone hospitals can be confusing to navigate due to their sheer size. Poor signage and corridors that all look the same, doesn’t help either. But I’m amazed how often staff can be dismissive of you when you ask for help. I know hospitals are busy places where everybody is under immense pressure, and it’s a challenge to remain patient with everyone when it feels like you spend all say having to go the extra mile for them. But I’m an individual who doesn’t want to be a chore, I’m not stupid I just need of minute of your time and a friendly smile would go a long way.

I’m sorry but sometimes the standard communication procedure doesn’t work for me.

If I’ve just answered a standard question like “what’s your reference number?”, with “I didn’t know I had one, I’m sorry I have a brain injury and I probably missed it”, don’t continue to tell me off as  “it’ll always be on everything we send blah blah blah…..” with that disapproving frown on your face. Would you behave the same way if I said “I’m registered blind so I couldn’t read it”? Sometimes I can’t concentrate enough to see there are details I need. I’ve lost count of the amount of times I thought I’d received the same letter twice from the hospital. It would take my partner to point out it’s completely different from the previous and about a different matter.

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You’re the expert, don’t ask me “what do you want me to do?”

I had one appointment with a Neurologist who had never met me before. He took one look at me when I was explaining about my double vision. He leaned forward and said, “Yes but want do you want me to do?“- I don’t know what I want you to do, because I don’t know what you do! He officially discharged me after this one meeting. Also he cancelled further follow up appointments I had booked with the ophthalmology department. He was so arrogant he felt sure it was nothing to do with my eyes. I mean I wouldn’t want to waste anyone’s time would I!

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There are thousands of amazing people in the industry who are worth their weight in gold for what they do. I am thankful for all the amazing people I have met along the way, and value their input and kindness. As for the rest of you, please try to use some empathy and see what it’s like on the other side.

I’d love to hear your good and bad experiences. Is there someone who wasn’t a medic but seemed to get it surprisingly well?Share your stories.

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16 Replies to “Brain injury patient alert, what do you expect?”

  1. Michelle: Having experienced all that you talk about and come around the other side of the tunnel, I appreciate what you are talking about.

    Most people experiencing the problems associated with PCS do not have to live in the tunnel the meds have put you in. There is a way to help most sufferers that is pain and drug free. It is not a cure all, but it has helped many people through the main problems that are associated with the problems you are having. I would be happy to explain more, so contact me at my e-mail
    address

    1. Thank you Anthony. I am not taking any medication and the symptoms are slowly getting better, but thank you for the offer. But others might be interested, so if anyone would like to hear more of what Anthony found worked for him I can put you in touch.

      1. I would like to know what Anthony has found as the drugs don’t do that much for me and I would like to be drug free and have other solutions for my brain injury. I live in the USA and my injury is twenty years old but seems at times like it will never go away for me. I get very frustrated as a lot of health care professionals are clueless and I get tired of having to explain it all the time even to caregivers. Thanks so much for your help! Cindy

        1. Hi Cindy

          I have emailed you Anthonys email address, and I have emailed him to let him know you will be in touch. Really hope he is able to offer you some good solutions. Let me know how you get on.

  2. Sometimes it’s not your ABI, just the hospital. I favour getting my Grumpy ON and expressing I don’t work there! And hopefully there is a volunteer on hand or coloured tape on the floor to follow that will get me where I need to be. Don’t take it all personally.

  3. It is sad isn’t it to live in a world of the unknown, to make appointments and travel miles to visit with a professional who sworn an oath to help a person, but yet to witness a Physician not give a darn about that same human, I am the caregiver/mom of a TBI patient, who also has spine damage from an auto accident, he is seeing a “PAIN SPECIALIST” who will gladly stick a 9 inch needle in your back to help ease your pain, but yet questions the patient on pain medication, yes there is an epidemic of drug addicts but a person with pain is a person with PAIN not a addict, to be told OH your to young to be taken pain medication, who, what an where did you got to school, MR DOCTOR, asked my son after my son received a spinal injection, why would you need pain meds for home?, well IDK why did you just stick a 9 inch needle in his SPINE you buttface. So very very sad our world is definately sad, I watch my son suffer in pain, I want things to change. God bless us all.

    1. Oh your poor son what a horrible thing to go through. And so difficult for a mother to have to see her son in pain. Wish you both all the best.

  4. My suggestion and what I do, now, is to totally drop the term “brain injury.” It means nothing to anyone who doesn’t have one. Please don’t be grumpy. That helps no one. 🙂 Use this to explain yourself: “I’m sorry, but I have brain damage…” and tell the person what you are struggling with in a way that you know others struggle. That creates empathy on your part and on the part of thither person. You know, we brain injured people have a hard time seeing outside of our world. I’m in Speech Therapy right now and that is helping me to see outside of my injured existence. You might try another Nuerologist or the same one again and tell them you’d like to see a Speech Therapist, or that you would like an MRI to see exactly where your brain is having the worst time. Over here, “across the pond,” we have to have referrals (sp?) to see other specialists. I don’t know how it is over there, but that was the process I went through. Good luck and I pray you get what you need!

  5. My suggestion is to drop the term “brain injured” forever from your vocabulary. I have recently done this. It means nothing to anyone who hasn’t experienced one and isn’t as descriptive a word as we need to explain our injured state of being. Say, instead, “I’m sorry, I have brain damage…” and explain what you are having a problem with in a way that you know other people struggle, i.e. not having enough time, the expansiveness of a hospital, or fatigue. Don’t use those words though. People always get upset about using big words-at least over here, “across the pond”, they do. I hope this helps.

    1. Thank you that’s interesting. Actually here they usually all it a head injury, which also doesn’t say anything. I think it sounds its down playing it a lot. So I see your point, I’ll try that.

  6. Communication seems to be a big problem, letters of a referral lost, phone calls that are never returned and unhelpful receptionists all add to the anxiety and stress of a brain injury. There seems to be a lack of care, but also there’s a nurse or a psychologist who holds your hand, waits for you to gather your mixed up words, passes a tissue and actually listens and takes your worries seriously. I recently received hospital letters for a MRI scan, 3 months earlier than my consultant had said the appointment would be, first reaction was ‘oh no I’ve been recalled early because they have found something more serious, has my tumour regrown?’ You know how the over thinking comes and one thought leads to another. So days and nights of worrying and we get to the hospital, book in at reception, are sent to the scan waiting room, hand questionnaire in. Wait 2 hours, ‘ oh sorry there’s been a booking mistake’ ‘ you should never have been sent that paperwork ‘ I will make you a new appointment for in 3 months, it’s a staff problem, your the second person today that has happened too! ‘ you should have phoned to check that it was happening ‘! What I have to ring and check that my appointments are real and the letter I have been sent isn’t a mistake? Crazy eh? But you know I am glad that I have another appointment and there’s some one who will check me out and help with this poorly brain. I just don’t want wasted time and energy because communication and care isn’t in place. It’s not personal it’s just a dysfunctional system with some dysfunctional people running it. But then again we are not perfect either.

    1. That’s a very valid point Jo. Of course we all make mistakes, and I don’t want those people in the healthcare system to think they’re not appreciated. They do an amazing job, and thank goodness they do, as many of us wouldn’t be here without them. I know some of these minor errors are insignificant in the massive ocean of good they do. But sometimes I do take it personally.

  7. My 8 year old son is on the high functioning level of Autism. I am 6 & a half years away from being diagnosed with PCS, 4 concussions later and in many, many ways, he understands me the best. Perhaps because I understand his sensory overloads, I know what it’s like to have so much spinning around one’s head and not be able to express myself, so in knowing how he feels I can communicate well with him. Add in his intelligence, his incredible memory and his very kind heart and he asks me things like, “Your brain hurts doesn’t it Dad” “I’ll go for a walk with you if that will make you feel better” and lots more. PCS has made me a better Dad, so good things can come from miserably bad things. My circle of people who try to understand and still love me unconditionally has drastically shrunk, but those who I’m blessed to have in my life are golden! The biggest blessing though is that before PCS I became a recovering chronic alcoholic, the rigorously effort that is required for an alcoholic of my type is my biggest weapon that made me a survivor and will keep me trudging on regardless of what comes my way. Living in a rural community with minimal quality medical help for my brain, I attacked my condition by trial and error and I relied on the support of group of people with PCS.
    The number of people who understand, support, listen, don’t judge and love me has no bearing on the quality of my recovery, very helpful, but not a requirement. Medical help is so very important, however one can make positive, quality steps on the PCS/TBI recovery road if quality medical help isn’t available.

    1. Your son sounds like an amazing young man! And it’s always nice to hear of how someone has been able to turn a negative into a positive like that. Thanks for sharing 🙂

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