Needing Advice

Hello, I'm MissBentley. I was wondering if anybody else had a problem with the fact that they felt nobody REALLY listens to them regarding their health problems. I'm asked how I am but get no feedback? Do I shut up or pretend everything is fine?

[tabey]

Hi welcome to the club i get you 100% your asked how you are you explain and then you see tumber weed in the others persons face or maybe a raised eyebrow.It is really hard BUT and its a HUGE BUT you have nothing to prove to any one you know how you feel and you can be true to yourself and find the inner strenth to go on.

But never give up hope and never stop fighting

Things are slowly getring better with in the battle for FND.

Tabe

😀

[Hidden in reply to tabey]

Thank you x

[210272]

I'd ask them why they don't seem capable of hearing you or helping you.

[Hidden in reply to 210272]

Hi there, thanks for replying... I've wondered if it's because they are scared or just don't know what to say. However, I would prefer a good old-fashioned honest chat explaining all I know (and that's not very much), rather than silence and a change of subject. I've given up really... if somebody asks after me now, my husband says I'm in a lot of pain and doesn't go into anymore details.

[210272 in reply to Hidden]

We need to be heard, not silenced. I get why your husband speaks for you but your voice needs to be part of the conversation.

[Hidden in reply to 210272]

Lol, He's the only one who goes out. I stay in and am in bed for the best part of my days.

[210272 in reply to Hidden]

But your voice can still be part of the conversation via the internet. Obviously I don't know what your primary diagnosis is but there are plenty of groups out there where your voice will be welcome. Some are better than others (usually depending on the training of the admins) but you'll get a feel for whether you feel comfortable in each one soon enough. Let's hear your voice, MissBentley

[Hidden in reply to 210272]

Thanks for the encouragement - I'm still learning. 🙂

[Brokendeer]

Hi I am now in my 13th year of Motor FND, so you can imagine I have done the rounds for several years for diagnosis, employers and NHS Therapies etc

I have basically giving up on ever being truly heard /understood by people inc. my GP and my condition ever being seen as a physical disability (out of my control) which affects me on a day to day basis.

Other FND sufferers are the only ones who can understand how hopeless it feels in the Medical World to get anything positive out of the system. Although another Post did say there is some glimmer of hope now, because FND is now listed on the NORD `Rare Diseases' Website- this National Recognition will go a long way!

As for your condition day to day being accepted by others, it will depend on how you approach the subject and what you want out of a discussion/conversation;

- If it is friends, doctors and general people - you are unlikely to get them to understand - accept the inevitable there, because they haven't heard about FND before, they probably do not know anyone else with FND and it's not like MS or Parkinson's, as there is no common set of symptoms defining FND.

- Family can be educated into specifically what would help you with your daily struggles and I suggest you keep it very much on a task by task basis. That way they feel good about positively helping you and you feel good about having some useful support. Try to keep detailed FND symptoms to a minimum in discussions, it just confuses them, better to generalise with problems that they may have experienced themselves i.e fatigue/lack of sleep or heard about from others with different conditions i.e Arthritic joint pain, Stroke.

My easiest description: "I have a Brain Condition that affects my coordination" and that is usually sufficient for anyone to acknowledge why I have problems.

If a bit more detail is required: "I always need to think about what I need to do first, before finding a safe way I can actually do something".

Try to laugh not cry at weird unnatural incidences/situations when your body lets you down; like accidentally knocking something over or miss speaking a word, as this reduces stress and awkwardness at that moment - on both sides. Also know these blips of nervous system miscommunication does change, you don't get stuck in one mode forever. Be patient and always go at your own comfortable pace, never struggle to keep up with others - they can wait!

Be kind to yourself, look for the calm in the storm

[Hidden in reply to Brokendeer]

Thanks for that, Brokendeer. My Family and friends have been aware of my health for years now as I also have chronic Epilepsy, NEAD, chronic Fybromyalgia, CFS, Arthritis, Migraines and Asthma. I am a positive person... just every now and again it will get on top of me for a day or two. I agree, you have to laugh. If I feel down I think of all the irons and kettles I've gone through in my lifetime, how many chairs I've broken etc. I'm also grateful that I've only ever broken one bone - my nose. I am sad that I can no longer do crafting now due to my hands, but there will be something else for me. 😀

[210272 in reply to Hidden]

Migraine World Summit coming up soon Also Anne Oaklander's work about Fibro might be of interest to you.

[Hidden in reply to 210272]

Great,thanks forthat.

[210272 in reply to Brokendeer]

From personal experience having a rare condition means that people are more susceptible to being diagnosed with 'conversion disorder' and I don't think people who wrote that about FND on NORD have had time to update it because it is now thought to be very common.

[MONIREN]

I feel for you, it is hard when people don't understand, but sometimes harder when they don't want to know. I have ones who think positive thinking will help, but isn't that like you have control? Concentration does help with the weird walking, so when I'm tired, which is most of the time, it's so difficult. I think for me, the involuntary jerking in public is the hardest. I jerk involuntarily at home as well, so it's not nerves. Very hard on my neck, I have a husband who does lovely massage to relax the muscles but he also lets me hang on to him crossing the street. I see you also have multiple health problems. Just doesn't seem fair. Hang in there. Don't stop fighting. Take care.

[Hidden in reply to MONIREN]

Oh bless you. If my husband gave me a massage his fingers would be digging in... fingers like claws 😂. Great you can get some wonderful relief from your man.

[Prosaic_One in reply to MONIREN]

Oh YES! I really have to hang out here more often cuz I forget there’s anyone else in the world who can relate.

I constantly hear the “mind over matter” argument and damn right, it only works when you genuinely have control. It’s maddening!

[MONIREN]

My husband used to be like that, but he has been through some serious health problems himself and realises that we have to help each other to live independently as long as possible. 46 yrs of marriage, I have nearly got him trained. Lol.

[Hidden in reply to MONIREN]

That's a great length of time to be married. Very special. 😀

[whirlygirl16]

Hi there Yes I'm feeling exactly the same. I think most people do with this condition. It's horrible! At least things are going in the right direction with FND hopefully we'll be taken more serious in the future as they learn more about it 🤞

[cocoferraro]

Hi there,I was diagnosed 8 years ago, and even then the neurologist was excellent, since then I do not get taken seriously.

I think it will be a good few years before FND is recognised and TAKEN SERIOUSLY, although you must have the right meds and a good doc. much luvxxx

[Prosaic_One]

Wow I’d convinced myself I just hadn’t found the right words to explain FND to people. I can be very chatty & generally enjoy new experiences but this diagnosis has caused me to become more introverted because of responses I regularly get.

I also have a family that don’t understand (nor care to) what I live with everyday. I’m simply tolerated by the people I once believed loved me. They firmly believe that I invent most of my symptoms for attention.

So I’ve been isolated for many years due to people’s suspicion towards me. I used to be stuck in a wheelchair, then walked with a cane. I fought so hard by myself with almost no medical support & now I’m much healthier. Downside: without appearing to be disabled now, new people tend to think I’m being dramatic until they witness a seizure. Extremely demoralizing.

[Hidden in reply to Prosaic_One]

Hi Honey, I can totally relate with you.

12 years ago, when I was diagnosed with Fibromyalgia, I was put straight into a wheelchair. However, the FND was obvious then really because I was head bobbing and couldn't move my arms properly and my husband had to help me get ready etc. When we went into town, people we knew and so-called friends would see us and cross the street. Nobody texted, phoned (other than family). Totally cut off from friends. My husband still bumped into people when he went shopping, but the hurt was there. Having said that, I met up with and have become really close with someone I used to work with, and she makes up for all the others. However, I've become a recluse apart from medical appointments or visiting my Dad. I use the wheelchair, but my husband has to push because I don't have enough energy to do it myself. I have crutches, a walking stick and a walker. Each day is different. Even though I can hardly walk I will try walking around the house for a bit and end up in bed again because of the pain. We will always be judged, but it is not their place to judge. As long as we have peace in Who we are then that is all that matters. Much love to you xx

[MONIREN in reply to Prosaic_One]

I refuse to isolate, I do have people that give me weird looks and keep their distance, but I've found many who go out of their way to be kind. I always feel down after shopping, standing in line causes jerks, my hands find using my purse difficult, I'm grateful that my husband stands by patiently, usually chatting to them,he doesn't take over. Even though I get stressed about my symptoms, here, I realize what little I have to deal with, compared with some. It's scary as it progresses, wondering what will I get next. For those dealing with this, be kind to yourself, what others think is unimportant. Take care!

[Hidden in reply to MONIREN]

Hi Moniren, how are you today? Sorry, maybe I misled you but I'm isolated not for my health - certainly not ashamed there - but because I have panic attacks when I do go outside.

[MONIREN in reply to Hidden]

I'm sad that panic attacks isolate you, they are very debilitating (thank goodness for inbuilt dictionary in phone). It's very much a snowball effect, one thing causes another. Hope today is a good day for you! Take care.