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I LOOK OK.... My frustrations with loved ones that don't GET IT!
I had a hemorrhagic stroke on my 30th birthday June 2nd 2011. The frustration that I have always had with family and friends is that when I try to explain to them that even though I look okay on the outside on the inside I have definitely noticed a change and how I function. They brush it off like girl you are blessed instead of understanding that I had a stroke that almost killed me and live in constant fear everyday that I will have another one. I have soldiered on of course and made adjustments in my life to manage my new normal. it can just sometimes be annoying that people don't take what happened to me seriously because I do not have any physical deformities.
What I do have is chronic fatigue that makes me physically inactive and mentally drained. Has anyone else dealt with this and what do you do to manage family not understanding while at the same time accepting that you are not the same anymore?
Spooky75, September 4, 2018 10:56am EST
Hi! Thanks for sharing your story ... and your frustrations.
I can totally relate to how you're feeling. I had a stroke 10 weeks ago today (at age 42), and many people don't even check on me anymore because they assume I'm ok. And I AM ok, for the most part. But the internal struggles of feeling frustrated or suffering from that chronic fatigue you mention ... those are the REAL day-to-day challenges. I'm walking and talking and working and all of those things, but I'm horribly tired all of the time. Some days I just feel angry and bitter over the whole thing.
So, please know that you are not alone in how you're feeling. Honestly, what has helped me is journaling. I never thought that would be helpful, and I don't journal every day. I only journal when I feel the need to. Meditation is helpful, too. Those things are not cure-alls, of course, but I think finding some place to channel your feelings is important.
Be blessed, and please let me know if you'd like to chat more!
cookiesdad, September 4, 2018 11:46am EST
WOW - like words right out of my brain Spooky.
My anuerysm and stroke was 3/19, so I am a little farther than you. And yes, in medical terms and prognosis, I am far beyond what they thought (I was not to even make it)
I am different day-to-day. Some days I can run from 7am to 9pm - but the evenings are only lounging. Most days it is helping with horses in the morning, then computer work until 2:30. We pick up our granddaughter on way home. Then I normally take a nap (especially a bowling night). But my wife doesn't understand the need for a nap - she is now telling me it is because of not using my CPAP. Now while I know that has a part in me being tired, it doesn't change my mental strain, dealing with pain, dealing with the issue of feeling like a drunk penquin, etc.
I did copy paste the main and the reply to my wife. She doesn't feel she has an issue, but I am here to tell you she does.
JKViggiano, September 4, 2018 12:30pm EST
Hi 1stchoiceest. I am a caregiver to my husband, a 10-year stroke survivor. I can completely relate to your frustration! He has physical and cognitive deficits as well as fatigue. Even with all that, people tend to downplay the effects of the stroke. I have learned to just shake my head and forgive them. I believe they just don't understand that stroke results in brain injury. If it was brain injury from a car accident or something like that, they would get it. Stroke brain injury is different so they don't know what to say or do. Because it is in your head, there is nothing they they can touch or exercise or fix. Because the injury is beyond their understanding, we find other's reactions can be completely off.
I have learned to say things that help others gain some context, like "Brain injury is devestating and mysterious. It takes time and hard work to overcome the damage." There seems to be something about a general statement that pulls people away from their personal feelings and allows them to consider the concept.
I think it is hardest for family. They want you to be back to normal. It is scary. Everyone is traumatized. I hope you all find a way to talk about the fear and face it together. Good luck.
AHAASAKatie, September 5, 2018 8:57am EST
Good morning all! I want to share a blog from 2016 that has always stuck with me. You Don't Look Sick by Allison Durant I think it is timely to this discussion. Best Katie
Vegas, September 6, 2018 6:52pm EST
I tell people to try to get some counseling for themselves and the family members involved because communication is hard for everyone with or without health issues. The more that is out in the open and known the easier it is to explain some of what your going through. A counselor can help the communication process along.
Kinda have to find the middle ground even if they are wrong or don't listen, but have to respect yourself and be respected in the family and by other people..
I understand why they say your blessed but have to find a way to get them to understand the struggle continues.
Depending on the family structure things can really change after a death in the family. When my dad died my family pretty much didn't want anything to do with me and the splitting of my dad's stuff got messy. If possible strengthen the good family bonds and fix or get rid of bad relationships even if it's with family. Counseling can help but have to make sure the relationships are worth it. Everyone deserves good, healthy relationships but when you have health issues you really have to have good, solid, healthy relationships.
Good Luck with everything.
ShipinStyle, September 18, 2018 2:56pm EST
I deal with exactly what you're talking about, and find myself regularly telling everyone that while I only have right side upper extremity paresis that they see, there are dozens of issues they don't see, and they aren't feeling I regularly feel intellectually different And have debilitating anxiety in crowds and in public. I used to be super outgoing and loved being the center of attention but now can't even go to the grocery store without constant fear of judgement when I know I'm just psyching myself out. I feel unable to express myself and at times stupid compared to the old me. I can't even cook my own meals that require more than two step directions or to remember to turn off the stove or oven. All this at the same age as you. I was 30 when I had mine in March of 2017
The way I try to deal with my family and friends not understanding is to constantly remind them when the forget that the silent effects plague me whether they see them or not, and explain to the best of my abilities that I have lasting affects emotionally and mentally that are impossible to see or explain out loud and that usually helps to an extent but with friends, I no longer have more than my significant other because they all either refused to put forth any effort into being in my life, or were unable to because of their and my circumstances. That was the most painful part. Knowing and seeing people I spent many years as the only one to put effort into the friendship, and as soon as I was not able to go see them or make myself available to them, they faded out of my life no matter how hard I tried to be in their life. That does ALOT to a person's emotional self worth. But I've grown accustomed to being by myself and now prefer it actually
I'm sorry if I didn't give the info you were requesting, I hope this was enough to help a little :)
Vegas, September 19, 2018 3:33pm EST
I recommend finding a counselor for you and the family members involved. Communication is key and sometimes we don't have the skills to communicate with or without a stroke./ health issues. I'm on your side but think a counselor could really help them communicate with you better and you with them better, it's a win win.. No drugs just talking.
The friends and significant other situation is a lot to deal with, and a counselor can kinda help but the main thing is to find quality relationships.
Do you play video games? Do you think playing with a person with a similar disability would be fun? There is money in esports and can still compete, maybe start a team.
Jpico99, December 20, 2018 12:57am EST
Amen. I’ve known that feeling for the last ten years, having had my stroke when I was 8. People definitely only judge the outside, not knowing all of the messed up things on our insides. Would love to chat with you.