Hi. Feeling pretty low at the moment. Does anyone else struggle to get any kind of understanding or support from family and friends? I just feel so alone with all this. I get the fact they don’t get it. I understand whatever is wrong with me remains undiagnosed (bar fibro) and is invisible, but I struggle with the constant criticism and negativity and the permanently dismissive attitude. Not only am I battling with whatever it is that’s making me so ill, I’m battling with the so called “care” professionals who actually act like they couldn’t give less of a damn if they tried and, on top of that I’m battling the attitudes and opinions of the people I’m closest to, to the point where I spend my life trying to pretend I’m ok rather than being honest and admitting I’m not! I’m acting… In effect lying, simply because it saves having to hear all the sighs and tuts if I’m not jolly and normal! Is this what I have to look forward to?! Sorry for the low mood. Maybe I’m just having a bad few days.
i feel for you the thing is if it is ms it called the invisible disease and you know your own body my doctor is sending me to a neurologist under duress as she says its stress ive been stressed but never had all the funny symptoms i have got they are debilitating why pretend to people u are ok i cant do that and had to isloate myself a little but from the ones who are not understanding you take care and i hope you are feeling better soon xx
HI AF, we hear you. Many of us here know what you are going through and completely understand.
The road to dx is for many people long and frustrating and al the while health professionals are not listening, being dismissive and sending us on a wild goose chase, we are getting worse andjust want someone to listen, understand and take action.
Its hard to live with the symptoms and not know why this is happening to us. And its hard to tell loved ones exactly what is happening to us and how badly it affects us, so we default to “im ok thanks” even when we feel pants because its just easier than explain it to someone who has no way of understanding exactly what we go through.
I have had to learn to be a lot stronger and more assertive, but I still find it difficult. I think the main thing I feel is guilt. Even this morning as im typing this whilst mantally preparing my self to see a neuro this morning i feel full of self doubt andguilt, but I “know” deep down 100% there is something very wrong, whether it be MS or something else, I just want/need answers so that I can either get it sorted out or learn to manage it and get on with my life.
Its a tough battle but keep going, you will get there in the end. A hey, its ok to have “down” days, you’re only human after all!
Good luck with everything, hope you feel better soon and hope you get some answers soon.
Thanks Evey and Bunny. It’s like they think I actually want to feel this way and I hate it! I take every supplement I can but I don’t notice a difference and I guess the fact my neuro wanted me to stop my Tramadol which was lessening my pain but he believed it was causing my migraines (it isn’t and I know that for a fact but of course he won’t listen to me as I’m an unqualified moron!) so my pain has increased massively and my ability to get about is back to being severely impaired. I’m still waiting on my PIP to come through which I applied for in October! Once it’s through I may actually pay privately and see if it gets me any further as I think if I have to see that idiot again I may actually be incapable of holding my tongue! Lol Autumn x
Your description of the neuro, I couldn’t have put it better myself (about my first neuro).
A 2nd opinion is helpful, can you ask your GP to refer you to a different neuro? Apparantly “some” neuros are quite nice, though they do seem to be rare
But health professionals have a duty of care, and if you are not getting tat care you have every right to look elsewhere.
Good luck with thePIP, I have just submitted mine and they say it will be a minimum of 26 weeks before I get a response.
It saddens me tha so many people have to fight so hard to get listened to!
Hope you have a better day today xxx
Dear Autumn Fairy,
I understand completely where you are at with family and friends, in my experience they will be there for you for most of the time, times when you are feeling okay and are able to contribute something yourself. But when things become too much for you, they become too much for them too and you are left all alone, when you most need care and sympathy it’s just not there.
This is a “Catch 22” situation, when you most need help no help is forthcoming! I think that in the same way that we have a journey to make towards diagnosis and beyond so do our nearest and dearest we all need to make adjustments.
I am very lucky my consultant neurologist is really nice, she is known for caring and putting the patient first, she was very frank and honest with me giving me the heads up on diagnosis before all the necessary tests have been completed to make it 100% certain. Sadly the same cannot really be said of my GP who convinced himself that my increasing difficulties with walking and getting around were the result of mental not physical problems, it was a relief when I was told that I did have a definite physical problem.
In the end I had to pay to get seen, and it was worth it but you don’t know before hand who you will be seeing so it’s still a bit of a lottery. The sun is trying to come out, things can only get better, hang on in there and they will and we will all do what we can be assured.