Advice?

[jamilea]

I have been diagnosed with MS three times now as well as colitis. They don't know what is causing the colitis as of yet. This is all still new to me, in the past year or so. I'm going to start trusting the doctors and stop bouncing around to find a doctor "who will tell me the other doctors are wrong and that I don't have a degenerative and progressive brain disease".

So the story goes...

The advice I need is regarding loved ones in my life who just don't understand when I get sick, it's not because of "something I ate".

I just got out of an extremely abusive marriage, well that was a while ago. Anyway, I'm dating now after recovering through therapy and the new guy has been my best friend for the last six years. I don't know how to make him understand that when I go through a relapse, it's not because "well, I've heard on television that some people are being slowly poisoned and don't know it. Maybe your ex did something like that....." or "you are young, I know if you just keep exercising and eating right, you'll be fine."

Anyways, blah. Do you guys know why this is so frustrating for me? It's like I explain over and over again, "Hi, I have Multiple Sclerosis. It's a degenerative and progressive brain disease. There is no cure. Yes, certain things can trigger a flare, but there is no cure. When I get sick, I get sick, and there is nothing that can be done except to continue taking the medication they put me on and working to managing the symptoms."

But they don't get it. They still ask the same questions. "Are you sure you didn't eat something bad? Are you sure you're not just dehydrated?"

Unbelievable! I'm very frustrated with this. I don't know how to respond anymore. Should I just stop telling them when I'm going through difficulty? I need the support though.

Thanks for listening.

[poohb3ar]

you've come to the right place for support!
but i know you need it at home too.
don't have the answers as to how much you should tell how you feel. all relationships are so different.
so sorry you had an abusive marriage, but good for you for getting out! i've worked with abuse clinics and counseled abused woman and realize its really hard to get away. so i know you've got spunk and backbone! don't crawl back in, you are your best advocate whether in relationships or with the MonSter.
keep working with drs. until you get answers and the right meds you need. not all drs are the right fit. sometimes we have to 'shop' around and do something 'trying on' until we get what we need to help us with this trying disability. but it is possible to do and to live a fulfulling life with MS.
if you doubt this, read throught some of people's stories here.
the wonderful staff that makes all this possible for us to connect all have MS. they're not all marathoners, or super heroes (tho they are in my book!) they have MS like the rest of us and struggle in varying degrees like we do.
but they use it for our good. and at some point we all can pass that on to some degree to others fighting the MonSter.
hang in there! it's not easy, but it's also not impossible if you won't give up.
praying that you find the help and answers you need!
take care and God bless ya!

[Justsayyes]

Yes, I can relate to your frustration. I've pondered this awhile lately. I'm frustrated that everyone attributes fatigue to being old. (I don't feel being fifty-something is old.....) They don't get that fatigue is not just being tired.

I think it is common for others to try to relate to our symptoms. When I say I'm fatigued, I get I'm tired too. When I say I have muscle tightness/spasms, I get I'm sore and achy too. These responses that can be annoying may be meant to be supportive in a way. That relating to a symptom is "understanding".

Or else my friends are just egocentric and only care about themselves....

[booklady]

It is so hard to get that understanding we long for. When we are talking to the people that are the closest to us and they seem to minimize how we are feeling it is very frustrating. I often think they just dont know how to respond. In diminishing our pain, I think they feel like we will be able to "overcome" it. Like when we tell a child to "shake it off" when they stumble. We make it seem like it is not a big deal so the child wont over-react. I think people do that thinking it will be helpful; helping us to "shake off" what ails us. Clearly we know better. It doesn't help and it doesn't make anything go away.

Having said all that...what can be done? You have 2 choices...let them know that their approach to your illness is not at all helpful or you can swallow your feelings and come here for the understanding you don't get in the outside world. For me, it depends upon who it is. If it is someone who is in my life daily, they have to know how I feel. If it is a friend or distant family member just trying in their misguided way to help me feel better, I tend to let it go. Hope this helps!

[mjan]

Sorry for this lack of understanding you have been going through. But a couple of things I would consider if I were in your shoes.

YESS there IS help for colitis but not probably a whole like a helpful advice from MDs. I have a specialized nutritionist who can test for what you are lacking (stomach enzymes) or what you are eating that brings ON an attack (yup) so that you can AVOID these attacks. Most of us eat things not knowing how its going to mess up our digestive tracks. Oddly, my nutritionist HAD Crohns disease and his own father, a MD, died from it. So he knows what he's talking about. Regular dieticians do NOT have this training=NRT.

Find someone who uses NRT=Nutritional Response Testing in your area. Many are chiropractors..it will save your life and misery.

I do not dwell on the "progressive" disease process of MS. IN fact many diseases once thought to be progressive or even terminal are not any longer. So..taking care of self and resting, eating nutritionally, taking supplements for fatigue and such..DOES help.

But.. WE have to teach our loved ones what to do and not do. Your bf/friend is ONLY trying to problem solve as HE would and knows. But thats a great start..he could just ignore you or go away. You dont want to unknowingly push someone who lacks understanding of our disease away.

Lastly, Domestic violence sets up our insides to a lot of stress and fight or flight reactions=all involuntary. NOW your digestive track still cramps up..sends out too many acids and you've got a mess inside. Your insides do not know you are safe now..its still on Fight of Flight. THAT message has to be processed for it to be turned off. Its a form of PTSD.

Anyway.. you know I care..and will support you. Glad you have a good friend..be good to him..thank him for EVERY attempt he makes to understand, though off the mark at times..he is trying..

Warmly, Jan