When Even Loved Ones Don’t Understand…

You might think our loved ones would be the first and the best of our supporters in this journey. I am blessed, truly blessed. I have a husband who became my biggest supporter and advocate. He gets just how difficult life has become for me. Maybe because he actually sees me as opposed to a phone conversation where I say the usual, “Oh, I’m okay”! Then quickly turn it around with, “How are you”? The caregiver in me always comes out, as it’s part of me. When I came down with Labrythnitis, Mike stepped up to his new challenges and there were many! We had a ‘traditional’ marriage prior to this unwelcome and uninvited monster bursting into our lives. He didn’t complain how our life was before life forced him to learn the definition of ‘Vestibular Disorders’. I was working. He was working. And I did everything else, you know, traditional. Waa Waa Waa…! I acknowledge I’m lucky, as not everyone has this kind of support or that kind of husband! I think my adult children get it and I’m educating my two grandsons. The oldest one recently said, “But Memaw, I remember you jumping on the trampoline…”, he was referring to the Sensory Room at my work. That was in 2007 or 2008. Childrens’ brains are sponges! So he does remember me as a fun person, which I was.

I just want to be understood and accepted, like the old Gospel song, ‘Just as I am…’ Isn’t that a universal wish? To be accepted? Just as we are…now. I will be the first to say, ‘I wear my heart on my sleeve. When I love someone or something, I’m all in and there will be no doubt of my feelings. A more truthful statement might be, ‘I wear my emotions on my sleeve’. Otherwise, I’d wouldn’t feel so hurt by loved ones not understanding what I’m going through. I have a belief system I suppose, ‘Well if they really loved me, they’d get it’. Am I alone in my beliefs? Am I still lacking maturity at age 60 (and why do I even care)? Do I expect too much of them? Just how do I appear to them? Do they not see my challenges or do they think I’m faking this nightmare? Are they ignoring me because of my Vestibular Disorder? Have I missed too many family occasions or hurt someone unintentionally? Do they think I want to be like this? Ooooo! I’m getting myself mad now because my truth is, hell NO, I don’t want this! Who would? I am dealing with what I’ve been given. It’s not fair. I’ve learned that lesson with all the other life ‘events’ I’ve had thrown into my lap.

One of my siblings recently found my blog through Linkedin. “Gosh Margaret, I had no idea you were still going through all that, I’m so sorry”. On one hand, I felt a little frustrated, on the other hand, I felt heard. The later feeling meant more…Another sibling told me, “Margaret, when are you going to realize your life is God’s shit screen”? Oh my God! What does that even mean? These are their made up words. Please don’t be offended, I carry enough for all of us. I just sat there, mouth gaping, eyes glaring, and speechless. Yes, those stupid words cut me deeper than a sword and I am having such difficulty forgetting them. I know I should focus on forgiveness, I suppose. The truth is, Mike and I have had a life unlike anyone else’s. We’ve had the highest of highs and the lowest of lows. In 43 years of marriage, we have started over 4 times due to unforeseen, unwelcome and uninvited life events. My siblings have not experienced such events and I hope they never will. We don’t need to be reminded how tragic our lives have been by anyone, much less a loved one. For my personal emotional health, I’ve  had to turn it over to my higher power. I’ve let the painful (stupid) comments go, kind of…I believe there are such things as ‘toxic’ relationships. For our own health, for us to get better (whatever degree that turns out to be), we cannot be in such relationships. They are called this for a very valid reason. It will poison you. It will deplete you of energy you need for other things. They will make you cry. A toxic relationship is unhealthy. Period.

I have always considered myself an Optimist, but this Disorder has, bit by bit, worn me down. Not worn down as in gone. Worn down as a rock does over time with the constant flow of water. Drip by drip, over time, eroding it away, until one day, it reveals a hole. The rock remains strong, yet is now allowing the water to flow through it. This is the true meaning of ‘go with the flow’…If a rock can change over time, to just ‘go with the flow’, so can I. So can you!

vestibular.org

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12 thoughts on “When Even Loved Ones Don’t Understand…

  1. I can relate to everything you say. I was diagnosed with Vesticular Neuritis in February – two months after separating from my husband. I too am in my sixties and found myself on my own with a debilitating illness. It’s been a hard road but gradually I am getting back on my feet. Thank you for sharing your experiences.

    Liked by 1 person

    1. I am so sorry to hear you are on your your own. But you are not alone! I am an Ambassador for VEDA,check it out at
      Vestibular.org
      Thank you for your kind words, they mean so much! Hang in there! Have you checked out the fb support groups? Huge help for me! Keep in touch 😊

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  2. Like you, I have the most supportive husband! But I feel like just about everyone else in my life just doesn’t get it. After 10 years of battling Meniere’s Disease, I finally had to give up the one thing that made me feel important – work as an RN. I wonder sometimes what people think of my not working. That I’m lazy, I didn’t like the long hours, what… But in truth I miss everything about it. That’s why it hurt me so bad when a cousin said at Thanksgiving dinner one year jokingly, “I think it’s time you went back to work!” I spent the rest of my time that day fighting back tears. She is lucky to not have to know what chronic illness is like, and I wouldn’t wish it on her just to bring compassion. But I think that’s what we’re all in search of, is just a little compassion.

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  3. I do t think people will ever understand unless they have been there! An “invisible” illness can be so frustrating! If it weren’t for my husband witnessing my nystagmus, syncope & vomiting episodes… he may have been clueless too.
    Thank you for sharing! You just need to lean on all of us who actually get you 🙂 …the others, their time will come.

    Liked by 1 person

  4. I am blessed to have a very understanding husband, sister and friends. There are many who do not understand. I have bilateral labyrinitis disorder since an accident in July 2015. Also made worse by RFA spinal treatments for herniated discs. It is so frustrating and tiring and unfair. Thank you for sharing. It is helpful to hear from others who understand and are feeling the same way you are. We are not alone!

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    1. Thank you Candy! This was a difficult one for me to write. Those mean comments from one brother came out over 2 years ago…it’s just mulled around in me and I felt, surely I am not the only one! Thank you for your kind words.

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      1. I can imagine it was difficult to write. My hardest thing right now is doctors and lawyers not understand. It hurts when family doesn’t …..yes. Of all people you would hope that family would try and understand and support you. But when doctors and lawyers don’t …..it affects your life in physical,mental and financial ways. Veda.org has been a life saver and link for me. Blogs like yours make me feel connected. Thank you!

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  5. I’m like you, lucky with my hubby and kids. As for the rest, that was the reason I wrote my blog, so they could understand a little of what my life is like. It’s not their fault, how can anyone really contemplate how this effects our lives? For something so simple and so invisible it really is ridiculous the way it effects us. As to making it up, God I wish I was!! Be strong, every day is a blessing as they say. 🐨

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