Not even diagnosed and feeling furious today. Between pain that comes and goes and can’t be explained, crippling fatigue, mood swings and cognitive problems, I’ve been labeled just about everything by the people closest to me throughout my entire adult life. Whiner. Hypochondriac. Attention whore. Mentally Ill. Lazy. Distracted. Selfish. Stupid. Mean. Not once did anyone even consider that I might actually be sick. I’m not even nearly as angry with the doctors who never thought things might be related. Partly because I never saw any one doctor anywhere close to enough for a pattern to be obvious. Mostly because the people who know me best and are acutely aware of the pain, itching, forgetfulness etc. had me completely convinced that I was just complaining about nonsense. I can’t reconcile the idea that they love me with the knowledge that they chose not even to consider that I might not be exaggerating. They’d never heard of such strange symptoms, so they assumed I must be inventing them, discouraging me from insisting on health care that actually made me feel healthier. Convincing me that the problem wasn’t the pain. The problem was acknowledging it. They convinced me I didn’t deserve to feel better. And these are my closest friends and family? Who does that? I’m already this angry and haven’t even been diagnosed. God knows how I’ll feel with a confirmed diagnosis. Part of me wants to throw a huge party & invite everyone I know so that I can look each and every one in the eye and tell them to go ----- themselves. Part of me wants never to speak to any of them again. People suck. Just needed to get that off my chest.
I can’t say I know how you feel exactly - but the part about almost wanting to throw a party if/when you get a diagnosis runs true to some extent. A couple of years ago, when I was working elsewhere I had a few strange neuro symptoms, and they were very unpleasant and never seemed to believe me at all. Whatever my diagnosis turns out to be - whether it’s MS or something else, a small part of me wants to email them to justify myself. I won’t, because I know it won’t actually do anything to make me feel better, but I just hate the idea that people there still think I just couldn’t be bothered or whatever.
I think it is hard to understand though. Particularly when outwardly your symptoms don’t show as much it can be difficult for other people to get their head round. At the moment I have some slightly visible symptoms, and I have noticed a difference in how people treat me, even with those that have always been very supportive and understanding. I feel better generally than I have done before, but they automatically assume I’m worse, because they can see something’s wrong.
One of the hardest challenges of neurological problems is that a lot of the symptoms are invisible - and people are generally crap at understanding unless they’ve had them themselves
Fatigue? Oh, I get tired too! Awful isn’t it - I did 3 hours at the shopping mall after aerobics yesterday and I was knackered!
Pain? Oh yes, I had terrible pain when I had x. Ibuprofen is really good - have you tried it?
Your eyes don’t keep up with your head? (Nutcase!)
You have to go early because you feel like someone’s squeezing you to death? (Where does she get these things from? Attention seeker / Skiver / Nutcase!)
Along with that can be a healthy dose of denial. Our nearest and dearest don’t want there to be anything wrong with us - so they are sometimes more comfortable with the idea that we are exaggerating, depressed, stressed,… instead.
The true test comes with the diagnosis - when they have to face the fact that there is something wrong and that it is serious. It’s then that you learn who your friends are.
At least there are places like this - we really do understand.
Hi Jamie Mo I really understand your anger over how your loved ones have reacted. It’s so unfair that we don’t get the support we deserve. I think Karen i’s right when she says that some are in denial as they cannot cope with the idea that something serious is wrong with us. My mother has been useless. If I say that I have a particular symptom, she always seems to find something else that she has to match that. I think she feels that I am stealing her thunder for attention that she wanted for her old age! How weird! My sister was very upset. She grieved over my diagnosis in the way that I did. We can never be sure how they will react but just hope some of them are supportive. Hope you get somewhere with your diagnosis soon and that your loved ones come on board! Teresa xx
Hello and welcome from me aswell.
There isn’t one of us that does’t understand where you are coming from.
The unseen as said by others is the killer,but remember its good for you to come on here and let it all out,and knowing we not only believe you we suffer from the same things really does help.
I’m another who understands exactly what you mean. I’m not diagnosed yet so I think people think that means I’m fine. [quote=“rizzo”]
Your eyes don’t keep up with your head? (Nutcase!)
Karen Thanks for this. I have been trying to think of a description for this exact thing.
Update: Neuro’s office finally got my insurance all sorted so I could schedule my MRI. I feel like I’m finally catching a break because I was able to get in tomorrow. They’ve said that the results should only take a couple of days to come back so I should know something by early next week. I could even get really lucky and find out by the end of this week. It will be nice to know so I’m praying that the MRI is compelling enough to keep me from having to wait for more tests. I’m worried that I will run out of resolve if the process gets too drawn out. We shall see!
Hey Jamie Mo, Do not run out of resolve. I know it is a long drawn out process and just consists of waiting but that stage will end and you will get to your destination. Please hang in there! There is an end in sight. Teresa xx