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Family doesn't get it. Any suggestions on how to cope?

Jan 29, 2017 2:08 PM

As I have mentioned before, I have 4 children and my two oldest have been living with my mother for this school year. This was considered the best option since I'm not supposed to drive and an apartment we can afford on my wife's salary is small and in a bad school district. This was all discussed with my mother for months before everything was decided and finalized (down to who's car insurance they will be on).

My relationship with my mother has been contentious at times, and throughout the last three years since my original diagnosis, she has repeatedly denied my condition. This spring, they found two bulging discs in my spine. Her response was that I needed to recognize other people are in pain as well. She has decided that since she was in the room when a neurologist told me I had no lesions in my brain and therefore my tremors aren't related to brain issues, that I actually have a mental issue and not a physical one. She also told me I wasn't caring enough when she had an eye removed 20 years ago. (An elective procedure she scheduled the week before I graduated HS)

Fast forward to this fall, when I have had a significant change in symptoms that has me using numerous appliances and learning how to do simple things without further worsening my problems. Despite any evidence, my mom has decided I needed to work harder to "get better" and that I should be grateful because my condition won't kill me.

I've also begun to get horrible messages from siblings saying that I need to grow up and go back to work (I was a chef). My grandmother has begun harassing me on social media. Oddly, the only support from family has been from you dad, who has always been distant and in his own world (he lives in another state).

I know the family messages are coming from things my mother has said because she's also told my children that I'm being a baby and need to go back to work.

So, has anyone else had to deal with the open hostility from family members? I've tried to explain things, even showing them letters the doctors have sent to insurance and government agencies. Nothing seems to bring understanding, let alone compassion. I'm at the point of cutting off contact.


Jan 29, 2017 2:26 PM

A huge hug and lots of love from me... I'll write tomorrow a longer story... But for now know you are heard by other who do recognize it...😉

Jan 29, 2017 3:21 PM

Adam 798, I'm so sorry to hear what you're going through, physically & emotionally. (((Hugs))) Have you tried to express to your mom how much her comments to you or others hurt, how much it makes you feel completely alone? If you have and it's not helped them in truly sorry. I don't know what it must feel like, as my family is supportive. Sometimes it's best to step back or away from communication within any hostile environment, be it work, home, family, friends, or social, public or private. You have to take care of you first. And you don't need any additional stress. If that means reducing exposure to family then so be it.

I've had spinal issues for over 25 years, originally in the neck, but eventually all down my spine. I had surgery twice in the 90's. I started having issues with my hands, neck, shoulders & headaches in 2011. Then I developed tremors out of nowhere in 2015. I was sent to Mayo clinic after a complete neurological workup, including a spinal tap for MS (negative). I knew I had bulges, tears, and stenosis in my spine, and my hubby and I suspected the neck was connected to my tremors. Every doc said it wasn't. After throwing up and causing a disk to slip into the spinal cord my new doc said surgery couldn't be delayed. I'm still recovering from the August fusion of C3-4. Oddly enough my hubby and I have been seeing a gradual decrease of tremors in my hands. I intend to mention it to my doc when I see him next. Is it possible your tremors are connected to your spine? It's worth checking into and even getting a second opinion. You should know that you can always depend on support here in our community family. Sending you hugs love and prayers! 🙂💕🙏🌸

Jan 29, 2017 3:26 PM

The tremors are absolutely connected to my spine. I have stenosis and syrinxes in my cervical and thoracic spine. My neurologist told me that the tremors were due to poor nerve control because of motor neuron damage and also are long tract signs.
I'm sure you know the concern the doctors had was MS, because it sounds like we've had similar work ups. Unfortunately what my mother heard was the neurologist dismissing the tremors because it was just a presentation of a known issue and not because of a new problem, like MS.

Jan 29, 2017 3:30 PM

I'm really sorry about your mom and your family's closed and uncaring minds. Hopefully others will have suggestions on ways to deal with difficult family. (((Hugs))) 🙂💕🙏🌸

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