Last reply 6 years ago
Very worried, frustraited, and feeling alone…

Complicated situation that has brought this up…but I’m not really getting any support from my parents. They are reluctant to help me get the medical help that I need and I’m feeling very alone and hurt. Don’t know what to do.

Sorry for the sad rant. Tried to keep it to the very minimal just needed somewhere to voice these thoughts.

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6 years ago

I am really sorry to hear of your situation. It is really difficult to understand them really but everybody deals with things very differently when I was first diagnosed I didnt tell my father as I thought it would devastate him, but as my condition got worse I eventually had to tell him, well it was as if I hadn’t bothered he still doesnt really understand or pay any interest in my condition I think he thinks if he doesnt acknowledge it it isnt happening it may just take some time for them to come around the important thing is to do what you think is right for you as only you know how you are feeling. Anyway hope this helps, it is great to share problems and not feel so alone so tell us how you are getting on

6 years ago

Hi Chels,
Sorry to hear you feel sad. I understand how you feel.

I can’t or hardly discuss it with my husband. Anything medical he gets fidgety and uncomfortable. I don’t take him to any off my neuro app. He did not even come the one where i got confirmed that i do indeed have got MS. I was rather upset after hearing that and wished he could of been there for me. I recently, last week friday got told I def need to go on meds as they found active lessions and currently awaiting the possibility to be entered in to a trial. I came home I wasn’t shocked this time round as i sort of expected it however when he came home late we had dinner and I said wright I need to start using meds he said yeah ok do we have to discuss that now I don’t wanna talk about that stuff…I just bursted in to tears. It’s one of the most important descisions I need to make and I can’t even tell you about it?! I hear all about your day at work and how your golf was bout i can’t discuss what has constantly been playing om my mind?
We did talk about stuff in the end but still not they way that would of been helpfull….

All my fam & Oldest friends live in Holland so that allready makes things a bit difficult

As for my mum, who I usually share and discuss everything with, she lives in cloud cuckooland. Thinks that it is all just fabrication. She has a friend who is a docter who told her that healthy peopple also have lesion on their brain and it’s nothing to worry about…dispeit of being in hospital for 4 days lumbar punture and development in my MS she rather sticks to that. O are you tired yes everybody is tired sometimes. you got bad cramps you must of done blablabla denial!

my brother gets really worried but does listen if i tell him but never asks himself still I rather not tell as i don’t wanna freak him out.
my dad is a down to earth man and if I phone him he’ll listen not worry to much and gives me sound advice wich is so odd as he is ussually not the prefered parent to talk to. (I do <3 my dad to bits but you know how it is right)

I have got friends here but yet not really any of them i feel close enough to to discuss any of this stuff with.

I try not to but sometimes it does get me down that there is no one physically around me that understands or at least tries to.

Luckely we got shift MS and although MS and all of us are different it's a friendly place where you can turn to.

Also a lot of the stuf you are dealing with isn't understandble to the people around you. Also perhaps they feel if we make it into a non issue you will not worry so much about it eiter.

XX when ever you feel the need to rant feel free to inbox me

6 years ago

Well lottie and chels, that is pretty shitty!
Family & friends should be supporting you at this critical time.
Recommend you MAKE that husband of yours accompany you to next appt with hospital.
Shows what a void that is filling.
Would say tho, that it is harder sometimes for the partner of someone who is ill………they get depressed, imagine you croaking and them being left to cope…..
(I know and your thinking its ME with MS, get over it)
Been there and been thru it…
Get friend and family to look at the vids on the MS Society site, get them info to read, to understand EXACTLY what you go thru.

6 years ago

Hi Lottie

I am totally in your position I dont think people around us are willing to confront our position as perhaps they are dealing with it in their own way but it can be very upsetting and frustrating as I often feel like they dont care. Thank goodness for this forum for the first time in years I feel like i have an outlet

6 years ago

Everyone – Thank you so much for your replies! Can’t tell you how just hearing them have helped me feel a bit better. Lottie…I’m so very sorry to hear that your husband and your family are so difficult. I really hope that changes and you can get the support you deserve. Until then hopefully you find friendship and support here.
My partner thankfully is wonderful. He is understanding and gets upset when I DONT talk about something…but my parents are awful.

I do feel like I have to state that I don’t have a dx.

There are reasons we/I suspect that it is MS, family history, location, and the incredible list of symptoms and how they present….But the fact is…we don’t know what is wrong. Seen a multiple doctors but was (literally) blown off my the Neurologist I saw. The ‘flare up’ I was experiencing was at its close and she saw me when I was at my best. She diagnosed me with ‘Vertigo’ (which explains only one of my many symptoms…and only explains the least of them) and told me to “Go back to your GP”. That was over a year ago now. With very little day to day improvement. Sadly this time around…some symptoms stuck around after it was over.

About 3 weeks ago I went to my GP with a new symptom that (wonder of all wonders) was actually visible and worried her quite a bit. She went over all the records and told me that since I’m still having symptoms and with this new symptom that she is worried about….I needed to go see a new neurologist. Given difficult insurance…I was to call her back with the name of a neuro that was covered so she could refer me.

My mother stated SHE would find me a name (they handle my insurance atm and pay for everything). Nearly THREE weeks later…I had to find a name myself and give it to HER for approval since she had still not looked one up.
During the conversation I asked if I should give the name to my GP and get the referral. Her reply was “Your dad and I need to talk about it…I’ll get back to you.”
So I in turn asked “Are you guys okay with me seeing a neurologist” (Which is daughter-mother speak directly translates to: are you interested in me seeing another neurologsit and are you actually going to let me got to one?)
and her reply was “I need to talk to dad” (Translation: we haven’t decided whether we are okay with paying for you to ANOTHER specialist. We will discuss whether or not we feel it is worth it and get back to you)

And just fyi…the translations are exact. My mother and I have always conversed in half specifics. When she doesn’t want to say something blunt…she talks like this. “I need to talk to your dad” instead of “we haven’t decided if its worth the money to send you”.

This is where I got off the phone…and started to cry. We don’t know whats wrong with me. I’ve nearly lost my job multiple times because of symptoms. I’ve landed in the ER MULTIPLE times over the last year. My last ‘Flare up’ had me nearly bedridden for a few months. I’m in daily pain. I got blown off by my last neurologist. And my GP is worried and wants me to see a neuro because of this newest symptom as well as the others.

My parents have become distant and argumentative with me in very strange ways. My mother gets super worried and excessively helpful when I have a simple cold….but when I mention that I can’t walk or am having spasticity and am in serious pain…she just tells me that ‘other people learn to live with it…so you can too’

And now…its a distinct possibility that I will be denied medical help and the possibility of never getting a dx and treatment for whatever this is….because my parents either don’t believe me, don’t find it important enough or don’t want to spend the money and time on it. (the latter being the one I have my money on…because that is most like them…although it very well could be a combination)

I feel like they just don’t care about my health or about me anymore.

Sorry for the rant!!!
Just…this got to me. The very real possibility of not knowing whats wrong got to me. The real possibility of losing my job because I don’t have a medical dx to back up my mobility and pain problems that interfere with work. It got to me that my parents care more about money then me and my health and comfort.

I’m sorry. Once I started I just couldn’t stop. I usually deal with my medical issues with a shrug and just carry on. I’m usual not this…whiny or cynical or ‘oh poor me’.

I very much appreciate you all being supportive and sharing your stories with me. Did make me feel better to know that I’m not alone and there are people to talk to. Thank you

6 years ago

Oh gods! Lol Didn’t realize the length of that until it posted! Sorry for the novel!!!

6 years ago

No worries! get it of your chest! it is good to vent sometimes!

I guess that is the American way so so so difficult when it comes to medical insurance. Everybody often moans about the NHS but this shows how lucky we really are in the UK. I’m orriginally from Holland where we used to have a simular system but now you’d have to pay monthly but that is an amount that everybody can afford. In the USA it’s a different story. So sorry!

6 years ago

Thank you.
And yeah…medical prices are absolutely ridiculous. Last year when I had my huge flare up…the subsequent doctor visits and tests (which in the scheme of things…weren’t very many. Three specialists, an x-ray, blood tests, one MRI, and an ultra sound) all came out to around 10,000 after insurance. Its crazy crazy crazy.

One good thing though…just got a text from my mother saying “hey, go ahead and call in to get the referral.” So apparently they decided they are going to let me see a new neurologist. I’m very surprised but very relieved.

6 years ago

my partner is probably on the autistic spectrum, he is used to me looking after him for things that ‘normal people’ find straightforward. i know he will not be able to care for me if i get worse. saddened to hear others stories but when i read of people who are given so much sympathy they need to be told to stop wallowing, i wonder wher my sympathy is? the closest i get is an hours shiatsu every six weeks or so.

6 years ago

Here’s a big hug to you all from Me !

6 years ago

I am so sorry to read your message. You should have all the support you need and I am sorry that you aren’t getting it! This site is a great place to (as you have done) get your questions answered, find reassurance, get information etc… as well as get support! You are always welcome to message me if you want to talk! I hope you’re feeling bright! 🙂 xx

6 years ago

Thank you so much to all of you! You have truly made me feel welcome and supported.

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