No, I don’t want your advice based on your husband’s (dead) mother’s (estranged) niece’s (mystery) husband’s traumatic brain injury and Lyme disease. No, I don’t want to hear about things that you think could supposedly help me. I’ve already thought of everything you’re suggesting. I have yet to encounter someone with a strikingly similar post-E presentation, so why in the name of all that is good and holy, do you think your limited knowledge of a distant relative’s TBI would be astonishingly relevant to me? Unless you have a magical drug to truly and wholly heal my brain, SHOVE OFF.
I know you mean well, but guess what: I have spent 18+ months talking to every possible specialist, doing every test, trialing every reasonable suggestion, and researching the hell out of what happened to me to try to make sense of it. But none of it makes sense, and it never will—not in this life, anyway—so why do you think you can fix it?
Just keep the advice to a minimum next time, and focus on being present with me. How about you actually listen to what I say about how I feel? How about you TRY to understand what my life is like? I’m not expecting perfection; I just want to be heard. I really am doing the best I can.
Sincerely,
A poor soul trapped inside a broken body
(This is based on a recent conversation with someone, but the general pattern has happened countless times with others; everyone wants to “help” and share their opinion.)
Addendum: I do want YOUR opinion. You all understand at a much deeper level. Don’t be scared to reply to share similar experiences or advice on how you handle situations like this. I wrote this right after the conversation to vent, and I know it’s a bit harsh. I don’t actually go around all day lashing out at everyone who tries to talk to me—especially not you all. 🙂
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kitnkaboodle
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Wow - what a post. I feel a bit nervous about responding - but here we go.
I know we’re all on different journeys but the principle of what you say will probably resonate with all of us. I think I mentioned in one of my posts/replies how frustrating it can be having a conversion with others who don’t have our condition. It’s very clear that most people cannot comprehend what we’ve been and continue to go through. Not even the clinicians.
I wish we could all be there with you to give each other a good hug and maybe cry a little together - I really do. We wouldn’t need words - tears would be comfort enough.
I'm sorry my original post seemed a bit intimidating; I wrote the addendum after reading this! Never feel nervous about speaking your mind with me. I appreciate hearing others' opinions and experiences.
Yes, it is frustrating, but I am glad E doesn't affect more people! When I do try to explain myself to others, they usually act awkward, shocked, or confused, and they don't know what to say. That's alright. (What's not alright is giving excessive, unsolicited, irrelevant advice.) I can't fault others for not comprehending the hell we've experienced. I do blame the doctors and clinicians a bit for their ignorance, though. They, of all people, should do more research on post-E life and take the time to listen to patients. That's assuming they know about E in the first place, which is shockingly not the case sometimes.
Yes, that would be comforting. I do appreciate the responses on here, though!
Hi Kit - for a while I thought it must be directed at me - we never know how things will be received. Ha! But I am in full agreement and there is nothing like a good rant to clear the air.
My sister - who lives on a self-appointed pedestal as an undiscovered genius and font of all knowledge advised me to stop all meds and go on a de-tox regime to cure the enc. When I now remind her of this and that if I had followed her advice I'd be dead she goes silent.
Mind you she might have been right. You can't beat a nice cup of Echinacea tea and a lemon barley water footbath topped off with essence of bogwort. Mmmmm ...
Oh, no haha! Definitely not directed at you or anyone on here. It was actually my mother in this instance, so I understand the frustration of a close family member sharing dumb advice. For example, I lost a lot of weight when I was acutely ill and have since gained. My mother thinks the weight is a primary reason for my fatigue, pain, etc. Sure, if I were a whale, maybe that would be true. But I'm not, and E is the source of my problems, not the expected weight (re)gain. Maybe my mother and your sister are the best recipients of the call to SHOVE OFF (I had wanted to use a different word here, but I was trying to keep it PG).
Too bad ice cream with Baileys wasn't a part of your sister's recipe for a cure.
I was a bit worried to reply when I first read your post, but yes I can relate to those close who want to help, but don’t really have the understanding. Life is made more difficult by the fact both parties have been through the trauma, but experienced it differently. My Mum is still convinced that it was the flu vaccine that caused my E and I was very cross when I discovered she was still telling people this after I had checked with my neurologist and been given the vaccine the following year.
Great point, AliBBeerDrinkerSing , about both parties experiencing trauma. This post was "inspired" by some useless advice/ranting from my mother, who saved my life and stayed with me the whole time in the hospital. She has her own pain and trauma to process and endure. I understand and respect that, but I'm not in a place to help her with it.
Ahh yes, my mother said similar things. For the first year of my recovery, she kept harping on the possibility that COVID caused my E, even after I tested negative 8 times in 6 different ways over 4 months. Ha. I think most people, especially parents, hate the not-knowing. We will never know the cause of my illness, and that bugs them, but knowing the cause wouldn't actually change anything.
Great point about not knowing, but it not actually making any difference! I think they are trying to still find out the cause of mine, but I am not sure where they will look! 😂I guess in a way, I do still want to know, but am also accepting that I probably never will know! I am just happy that my chance of relapse is low…
Yeah, I get that. I’m monitored for AE, but it seems like a random virus is more probable, although some of my symptoms suggest otherwise. After this much time, finding the cause is nearly impossible. Half of E cases have unknown causes. 🤷♀️
Is yours more likely to be autoimmune or infectious? When you say relapse, I think AE..
My god do I feel your pain! Just rushed into hospital via ambulance with violent headache after Covid.After being left sat in a corridor for over 4 hours they gave me morphine and a trolley and then 5 hours later they took me for a ct scan.At 5am I was taken to a ward where a junior doctor said we don t think your E is back but can happen because of Covid and we ll keep you in.2 hours later another doctor came and said don t worry about E but could be a bleed on brain instead so we ll do a ct scan with contrast.10.5 hours later they came back and said it s neither so you can go home. So sent home and 3 days later still blurred vision,dull headache and light arm and everyone saying you ll be fine at least its not E back.Noone understands what a life sentence this is and no well meaning advice will change that. What angers me is that noone thinks to provide advice on how to cope with it all except you guys.Drs just expect once you know not E back you ll go ok fine and be fine regardless of not knowing what it was.There appears to be no research re Covid post E too!
Sleepless 68....I feel ya. Awoke this morning around 3 to a violent headache. Almost took myself to the hospital Wed due to pain. No one knows what's going on. I'm sorry you had that scare and really hope this finds you feeling better. We are here for you.
Oh Sleepless. How awful. What a terrifying experience. No one understands that we are all scared underneath of it coming back. Everyone of us I guess. Sending you an internet hug. 🥰
This is absolutely unacceptable! I can't believe they did that to you. Actually, I can believe it... There are some similarities between your experience and how I was denied treatment repeatedly before my hospitalization. But, anyway, how are you feeling now?? Have you followed up with your GP, neurologist, etc.?
My original post was directed at laypeople (at my mother in this case), but I could write at least several posts on the arrogance and ignorance of medical professionals in terms of E treatment and rehabilitation. You're absolutely right when you said doctors expect you to be fine regardless of not knowing, and I would add that, in my experience, doctors expect you to be fine after E! Out of hospital and in the first part of recovery, I had so many doctors and practitioners tell me and my family that I would make a full and quick recovery. WHAT BULLSHIT. And you're right about a lack of research on E and COVID. I would add that there is a lack of research on very-long-term recovery (years) after E. Most doctors focus on the hospitalization and immediate rehabilitation and forget or ignore that many patients with E are indefinitely disabled and severely limited... or maybe that's just me... haha
Thanks Kit.They ve now decided severe migraine re Covid. Strange as still ill and blinding headache twice for over 24 hours each time in a week and constant dull ache,dizzy,nauseous,aching everywhere but at least out of hospital.All they said is Covid clinic will follow up with you? No meds or advice other than listen to your body. God if I listened to it all time I d scream. Knocked my confidence re E again as had just got to a place of almost acceptance but this has sent me tumbling down the mountain again. It is so good to know you are all out there fighting on too.take care all,x
Hi SL68. I'm wide wake again. Sleeping is just something my body does nmot seem to want to do lately. It's so incredibly frustrating. When I do sleep, I am awaken by a massive cluster headache. Calling it a headache is and understatement. I've have a headache before and these are different.
I absolutely know the problem.I tried alsorts of tablets,then acupuncture,massages,even tried these candles from a shop called a Geordie Witch which is supposed to relax you through smell of flowers.Honestly I d try anything to sleep and then not have fear of headaches or headaches themselves. Mindfulness and visualising putting pain in box didn t work either lol. I seem to want to solve world issues at about 3am lol! World peace and headaches seem equally unsolvable! Well just gotta keep on trying.Take care and hope you get some sleep soon.x
sleepless68 -- I love this: "World peace and headaches seem equally unsolvable." I wake and worry in the middle of the night as well. And endure the demoralizing pain.
(Cefaly device, Petadolex Butterbur, B2, and Magnesium Glycinate have been surprisingly useful in managing my headaches and migraines. They were recommended by my migraine neurologist.)
Hi. Thank you. I've been feeling better, less headaches and more sleeping. It seems to be cyclical but no idea what it's related too. Hope you sllep as well, it's so essential for our healing.
It's more about telling the E story than selling books. Did I mention my sister offered to publish it. Thinking of contacting ES for their help to compile stories from E peeps and publish multiple points of view and experience. Maybe doctors could read it.
That sounds like such a good idea. I have read Catherine Jessop’s book about her experience with her husband and that was really interesting. I love hearing people’s experiences.
Remos speaks for us all. Your post resonates so much as unless you’ve taken this journey you can’t totally understand but those who believe they ‘know how we feel’ when they clearly don’t and can’t are hard to deal with. This is such a safe place for your rant. Much better than the silent screams we do. Hope it’s helped!!!!
Thanks, Wygella ! Honestly, I thought about deleting this in the day after posting it. I wasn't sure you all would understand or identify with it. I am thankful I didn't delete it. Reading all of your responses has been encouraging.
I didn't say in the original post, but it was directed at my mother. Unfortunately, she hasn't quite learned how to be around me yet, even though she has been repeatedly told. I just have to shrug and say that I don't understand the horror E inflicted on my parents through me. Watching a child almost die and then proceed to lose everything short of her life is one of the worst things a parent can endure. In these ways, she doesn't understand me, but I probably also don't understand her.
(I laughed at your "silent screams" comment. So true!)
Hello Kitnkaboodle,I understand exactly what you are talking about and I'm so sorry you are going through this.
The big "E" not only effects the patient but also the immediate family.
I am my husband caregiver and I receive something similar to you. I hear from others, that I need to get on with my life. I want to scream... THIS IS MY LIFE!!!!!. They do not understand how difficult my side is. It's not physical hard, it's more mentally and emotionally hard. Anytime we are in a different setting my husband uses so much of his energy and becomes very brain fog. His short term memory is slowly getting better... Then I'm working with the doctor's office and insurance companies and pharmacy. All time takes time and patience especially when treatment is denied.
Right now since he is on Cytoxan Infusions which lower his immunity.... we hardly go anywhere. (One fusion is down...next one on Monday...then 4 more to go) . So we definitely need to be careful.
We were going to see the grandkids today and play in their pool however their plans changed and we only saw them for a couple hours instead. The isolation is tough and if I say anything to anybody... I only hear... I need to get on with my life..
I also get upset when someone tries to compare Encephalitis with Alzheimers. Telling me how they handle their mother who had Alzheimers. Alzheimers is not the same as Encephalitis. But I make up most people are too busy to take the time to understand.
My husbands does thank me everyday for all that I do for him. He is always asking what can he do for me. I always find something for him to do. It helps both of us. He now can make me bacon and eggs by himself.
I want to thank everyone who posts on this website. Your postings have helped me so much to understand what my husband is going through, which enables me to be patient and caring.
Kit, Thank you so much for venting today. You really help me to feel my feelings of anger and frustration regarding this disease and most importantly that I'm not alone in the way I feel.
For my self care... I'm starting to sew again. Here is a stuff dinosaur I made for my grandson's birthday. Next, I'm making Noah ark with animals for my granddaughter.
Sorry for the delay in my reply. I wanted to make sure to wait until I had the energy to respond completely.
I shook my head and rolled my eyes about the "just get on with life" mentality. Last year, my GP (who doesn't know a thing about E or acquired brain injury) said that I "should get on with life and stop managing [my] recovery." Needless to say, I avoid talking to her now.
You're absolutely right that E affects the whole family. At the time of my illness, I was renting in my parents' house. When I was first ill, I was isolating from my family because I thought it was COVID and was turned away repeatedly by doctors until I was nearly dead. My mom found me and called the second ambulance. My parents say my hospitalization was the worst time of their lives, which is saying a lot, and the trauma still affects them. Maybe you'd say the same as well.
I'm sorry your husband experienced E, and I'm sorry you two are still carrying such a heavy burden. I now live with my brother and sister, as I did when I first fell ill, and I see the burden they carry. They say, "the youth has been sucked out of me." They mean that emotionally, referring to watching me suffer and being responsible for me, while the same could be said of me physically. In my fits, I've often said to them that they can give up on me and send me away to our parents. They respond THIS IS OUR LIFE (for now). I can only imagine how that feeling is amplified for one's spouse, with whom you made the vow, "in sickness and in health." I admire your fortitude, and, from an E patient's perspective, I know how much your husband appreciates you, even if he might not always be able to fully express it.
I also understand the need to stay home a lot. I'm not on immunosuppressants, but the world is too damn loud and chaotic for me, so I don't leave the house much. Just for a daily walk using trekking poles and earplugs and accompanied by my siblings. I hope I can take a walk one day without getting freaked out by a passing car or barking dog. (I have a severe movement disorder and exaggerated startle response from E.)
One question: What do they say when comparing E with Alzheimer's? Is it mainly the memory issues, which are common for E survivors, or do they have other parallels? Yes, most people might be too busy to understand, especially medical professionals, but I've also found that many simply don't know what to say and/or they are deeply disturbed when hearing another's story of suffering. Or maybe that's just young people.. I can't tell haha.
P.S. I love the dinosaur and would like to see Noah's ark and the animals when they're done! I'm sure your grandchildren will love them!
That must've been really hard to write and I completely understand. There have been so many times when I've felt exactly the same. I really hope you find peace and allow your own thoughts and feelings to be priority. I've stopped worrying if other people know or understand, because I don't know what they, themselves may have been through in their own lives. I'm just trying to live for today and be the person I am now. I wish the very same on yourself.
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