If you’re a TBI survivor, are you tired of being told how lucky you are? How it could have been worse? How someone else has it much harder than you?
If you are caregiving for a loved one with TBI are you tired of hearing, “Isn’t it a miracle he’s here? Think of all the blessings you have in your life!”
If a very loud internal voice screams in your head, “Are you freaking kidding me?” when family and friends encourage you to be thankful, you may be suffering from an episode of Irritable Gratitude Syndrome (IGS).
My periodic episodes of IGS started fourteen years ago when a car struck my husband and we trudged through two years of TBI surgeries, rehabilitation, and treatments before he returned to a version of himself that he could live with.
Irritable Gratitude Syndrome isn’t pretty. It’s not what we strive for, but sometimes it strikes us when we least expect it. It sounds like this:
Sure he lived through this accident, but look at the shape he’s in — how will he ever get better? What’s there to be grateful for? He’s miserable, and so am I!
Sure we have a roof over our head and meals on the table, but we are stressed to the max and hate our lives right now … and this injury will probably make us go bankrupt!
Sure we have friends who care, but they have lives of their own. It’s not their job to fix this. No one can fix this!
And for survivors, it may be worse. I know TBI survivors who have said, “Sure I’m glad the doctor saved my life; I only wish they could have given me back my function, my job, my lost time, my identity …” (Fill in the blank. The list goes on and on.)
Yes, it’s ugly.
IGS cannot be fixed with a gratitude journal. After a loved one survives a serious traumatic brain injury, you need a thick “to do” journal because you will be busy. Busy scheduling surgeries, visiting rehab centers, and running to the pharmacy; busy signing papers, driving to appointments, and looking up definitions of neurological words. Your computer will be burning up with brain injury websites. Who has time for a gratitude journal?
IGS cannot be cured overnight. It may take weeks and months to find your bright spot again. It is a condition that may rear its ugly head as you and your loved one struggle through plateaus, setbacks, and hard knock realizations.
IGS cannot be helped by a cheerful friend with great news of her own to share — in fact, this may cause the IGS sufferer to want to punch that friend in the face for being chipper.
So what’s an IGS sufferer to do? All I can tell you is what I know from my own experience, since this is an unstudied syndrome not yet researched by neurogratefologists:
- Feel sorry for yourself. It’s okay to do that.
- Demand a little space alone to scream and cry out your despair.
- Forgive yourself for not being perfect or able to feel happiness for others right now.
- Tell yourself that time will help and watch the time go by. (Consider it lost. Accept that.)
- Hug your pillow.
- Hug your kids.
- Hug the dog.
- Hug the cat.
- Hug the UPS man. You get the picture. Hugging helps. No words, just hugging. Hugging releases oxytocin, the feel-good hormone. It lowers both our heart rates and our stress hormone levels. (Scientific evidence courtesy of the Huffington Post.
So there you have it. Irritable Gratitude Syndrome will come and go after a loved one suffers a TBI. Remember, you are not alone. And you don’t have to feel grateful for that.
Comments (32)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
D <3 J replied on Permalink
All I can say is thank you for this....I was searching for a word to describe how I have felt throughout my husband's recovery - from an accident most do not survive - how can I feel so grateful AND sad, angry, irritated, exhausted at the same time. Irritable Gratitude Syndrome says it all!
jeanna replied on Permalink
i love the hugging part. i was so overwhelmed with the help my cleaning lady was giving me i hugged her and totally took her by surprise. i was not a hugger before but i find myself overly grateful when people help me now and hug a lot more!!
Anonymous replied on Permalink
I have all that and more since my son had his accident I feel like I am about to go insane myself I am a ball of emotions and always feel sick to my stomach from nerves going haywire
Anonymous replied on Permalink
Wow! Thank you so much. I'm not a horrible, grouchy, ungrateful, and jealous person after all. We have to give ourselves some grace sometimes.
Anonymous replied on Permalink
Rosemary, Once again thank you for putting words to all of this. I wish you plenty of blessings to help you and your husband on this TBI journey. You both certainly deserve so much more. You made my day better. Thank you.
Anonymous replied on Permalink
I had my accident in 2004. I still suffer from IGS, as does my husband! I really have to show this too him!
Anonymous replied on Permalink
it was so good to read your blog , it expresses exactly how i feel . i said only today i'm fed up with being positive , somedays ; well most days i cannot see any positives .. as a carer my life has changed as much as my partner who has had a brain injury for almost two years . my hopes and dreams and money for the future have gone in one sentence ...you have a brain tumour ! xxxxxxxx
Anonymous replied on Permalink
Great article and I agreed right up to the hugging part...not everyone is a hugger...I'm not never have been...everything else is dead on.
Anonymous replied on Permalink
Great article, I agreed right up to the hugging part. Not everyone is a hugger or likes to be touched. I'm half german and half Lakota ...not a toucher..lol
Anonymous replied on Permalink
Peter mk2 is forgetful, short tempered, impatient and impulsive. Because I present well people assume that I'll remember everything. My issue is cognitive and planning. I'm fortunate that my wife is a medical professional and I live life and function as I have now learned to. At seven years post injury, I now accept who I am now. I adapt as the need requires.
Anonymous replied on Permalink
Wow..I have been here so many times throughout the last year. My husbands accident changed our lives so much, yet I took the burden on by myself. No one wanted to deal with the angry side of him. I hated the fact that other peoples lives just went on and mine seemed to be standing still. Everyday was the same, therapies, bed pans, giving baths, cleaning wounds, laundry, cooking, cleaning and taking care of our five year old. He never seemed satisfied, or content with anything. It was overwhelming. Almost a year later, he is better but the lingering effects are still there. The outbursts, the anger and the confusion as to why I am always so mad. Sometimes I feel so lost.
Anonymous replied on Permalink
Thank you once again Rosemary for knowing how I'm feeling and giving me permission to feel what I feel!! Finding this website and you have been a life-saver...and yes, I have read your book...I wanted to not like you for the longest time...and then you wiped that away in one statement (and of course I am paraphasing) "I was fortunate not to have been left with a misanthrope" ...well, I wasn't so I just felt like you were dealing with it all way better than I could ever hope to...and then I read that line...oh Rosemary, thank you so much for getting it and writing about it...between you for me and Janna for my daughter, so SO happy to have found Brainline!!
​Many thanks and keep those pearls of wisdom coming!!
P :)
Anonymous replied on Permalink
Really great piece, Rosemary. I rarely read an entire article because a few lines in I know what is going to be written; I've heard it all before, but this is fresh and so true.
Anonymous replied on Permalink
and it never ends...you might get good periods but we are 30 years after neurosurgery and still caring. things go away and reappear, mood swings, aggression, new things like agoraphobia, panic anxiety attacks. as I said never ends. people say Don't know how you cope. but that is the choice you have. you cope while you can then the decision comes and that is the hard part. Can you do it? Who knows until the day comes.
Susan replied on Permalink
I am 25 years post-injury, and I just accept it as part of my life now. The chronic migraines, anxiety, depression, painful muscles and limbs...
Anonymous replied on Permalink
Thank you, Rosemary. Most days, I feel like I'm drowning. I appreciate your making me feel like I'm not alone and others have been through this. I hope my husband will understand what I've been through with him, one day. This is a nightmare.
Anonymous replied on Permalink
Great article, enlightening. As the spouse of a TBI survivor who wasn't there at the time it is sometimes hard to relate to all he is feeling. Thanks for giving me some insight.
Anonymous replied on Permalink
Rosemary,
You wrote about a true "blind spot" that hit home with many constituents in the "TBI Community." The voice of the "invisible syndrome" that bothers all TBI caregivers and sustainers. The five-hundred lb. weight, it seems, attached to mind and body 24/7 an it will never disappear. . Time heals, combined with a healthy dose of hope an all will be resolved in time... patience, patience, patience... but in the meantime, your audience is growing exponentially. Your insight will never grow stale, as TBI is a never-ending, seemingly, journey that produces excruciating and nerve-racking results at the same time. Experiences that cause one to believe it will be a continual tributary of grief. But, there will come a time when coming to terms with TBI, acceptance on your terms, will be reached. When this appears, one never knows.... but it shall step forth, one day!!!
Art
Anonymous replied on Permalink
I just wish I would my husband shout it from the mountaintop how thankful & grateful he is. He shares with others (i.e.-lost loves) on FB yet never includes me, nor children how we stood by him or in any reference of any kind. I may get a pat on the back "wife works hard for BIAxx" he calls others "my friend" "you are always in my heart"..etc. However, He is a good kind hearted man & I'm grateful he is alive & able to do good for others. I am just tired.
Anonymous replied on Permalink
EXACTLY. perfect! And theres the prelude to this- insult to injury. Thank you :)
Anonymous replied on Permalink
THANK YOU for putting words to our experience.
Anonymous replied on Permalink
Best article that I have read in a long time. So chalked full of the "realism" of our "new" lives (or lack thereof). Thank you for sharing. We all feel this way but can't really "say" it to the public world who has no idea of the pain, isolation, regret, doubt, and fear that comes with brain injury. Please don't ever don't writing for our community.
Anonymous replied on Permalink
As a severe brain injury survivor, I agree wholeheartedly!
Anonymous replied on Permalink
Amen
Anonymous replied on Permalink
Excellent article. I am grateful to be here, but totally relate. Hugs cure all. Please keep sharing the love â¤ï¸
Anonymous replied on Permalink
Thank you awesome information thought I was just going crazy..
Anonymous replied on Permalink
Oh my gosh! I can relate to all of it! Thanks for giving it a name and making me laugh today!
Anonymous replied on Permalink
"Count the time as lost." Yes. Thank you for this and best wishes.
Anonymous replied on Permalink
Thank you!! Needed to read this today..
Anonymous replied on Permalink
Roe; this is so true to all tragic events in our lives. Just the way things are said can give different meaning to the recipient...... "So saddened by your loss" sounds better than " so sorry for your loss". Comments are made because we are physically helpless in our ability to change a situation,or make it better especially to those that we love. Hallmark does not have a card " Your life sucks right now" but it should. Nice article.. keep up the work. You inspire, educate and relate to others
Anonymous replied on Permalink
You hit the nail right on the head I'm sitting here crying that someone finally GETS IT. This is such a hard journey. Thank you for understanding.
Anonymous replied on Permalink
Brilliant, Rosemary! Let's stop pressuring ourselves to be cheerful, and the cheerfulness will come....and go...and come back again. That's life. Well said! Sandy