Sick of people telling me to be happy

[Nanobaby]

Same here. During the whole MRI process to getting the diagnosis, I was certain I had a brain tumor causing the double vision.
MS NEVER crossed my mind. After I received the diagnosis, I was actually disappointed it wasn't a tumor. Disability scares me more than death.

It can be considered offensively insensitive to wish cancer on yourself when nearly all of us have had some sort of dealings with cancer (family/friends/acquaintances).

But I can understand that honesty. I feel it myself.

Thanks for understanding. I think I had the same fears too.

[traceyco]

NOT SAD!

SOMETIMES IT IS HARD BECAUSE I DON'T KNOW HOW I WILL END UP !I DIDN'T KNOW UNTIL LAST YEAR, BUT I FEEL BLESSED TO GET A DZ! I AM NOT HAPPY, BUT I AM NOT SAD EITHER. I FEEL THAT MANY PEOPLE OUT IN THE WORLD DO NOT KNOW, AND A LEAST I KNOW AND I TRY TO THINK POSITIVE INSTEAD OF NEGATIVE.

Guess im the only person who was happy to have MS.

I was more scared of having cancer or a tumor in my brain.

Long as you take care of your self there really isn't anything you can do. So why stress it?

I take my shot with my vitamins everyday so its like a normal routine. It burns a little and sometimes hurts for a day. Oh well, gatta do it.

So in a way there right. Just be happy, nothing you can do about it now.

[richchaviv]

It takes time to come to grip with MS I am 39 now. I was diagnose feb 2003. I didnt take meds. I did non-traditional herb and vitamins. I was great very active and was doing everything I wanted. Wanted to finish college and go to law school but about 5 yrs ago I kept almost dieing. Viruses and internal bleeding dont know why. Then suddenly MS kick my butt. I had to learn how to do things so different then what i was taught. the saying no pain no gain. now if i have pain i went to far and have to suffer from it for a day or two. I am accepting and learning but its not the life I thought I would have. But most importantly I am so thankful that I have a wonderful loving heavenly father. GOD bless everyone and never give up. it might be diffulcult but it is all worth it and you will feel great.

[Reeko911]

I Understand!!

Hello Kayla,
My name is Eric and I must say I have been thinking that exact same thing since i was diagnosed 3 years ago. It is almost like living a lie for me. I tell people "Oh yeah things are good", but they really aren't. People tell me to get over myself and to grow up and it pisses me off and saddens me at the same time.

I am glad to find someone close to my age to my age who understands what I deal with. If you ever need someone to vent to, I am a great listener.

[meghanne927]

im 26 and just diagnosed march 20th of this year.....i had my MRI,Spinal tap and 5 days of steroids and my diangosis all in one week....my mind is still spinning...it was alot of things to process in such a short time. i still have tons of questions and upset i cant plan for my relapses and if and when im going to have a bad day. I so understand your frusterations.... my fiance is mad bc im not the old happy me anymore...lol im trying to get used to all this and figure out how to cope and what changes i need to make....i have a very stressful and hectic job and i have to try to slow down so i can keep my job...

i feel like people want to help but they dont know what to say or do so they say stupid stuff to try to make us feel better but it just pisses us off hopefully with time it will get better...im trying to take it day by day but its so hard that i like to plan things and it seems like with MS i cant do that!!

[newbie but goodie]

Oh, that can be infuriating! Even when we know people have our best interests at heart, its hard to hear things like “but you look fine” or “ just cheer up”.

My only advice is to be ready with responses. That way, people get a better understanding of how you feel when they make the comments. They wont know how you feel to have MS but they can try to be there for you in a way that won’t tick you off.

When people say- “be happy” to me, I say “I try my best and sometimes I am happy, but right now is not one of those times. Can I bend your ear for a minute?”

When people say “But you look so good” I say, “Thank God I don’t look like the pile of crap I feel like.”

A little humor goes a long way, and dry humor can sometimes get the point across even better!

[coffee]

Let me tell you, I understand you I was dx when I was 17 now I'm 21, the only person who can actually help you is divine yes God! You are not alone in this battle, you have a family here.... But yeah go to church or try to look for the divine power and you will see the difference God is real, you can either blame God, or come to him to reach for peace + healing is not impossible for him

[flipz11]

Hello Kayla,
My name is Eric and I must say I have been thinking that exact same thing since i was diagnosed 3 years ago. It is almost like living a lie for me. I tell people "Oh yeah things are good", but they really aren't. People tell me to get over myself and to grow up and it pisses me off and saddens me at the same time.

I am glad to find someone close to my age to my age who understands what I deal with. If you ever need someone to vent to, I am a great listener.

I haven't looked at this thread in a while and was finally reading through it and saw this but there isn't much info on your profile. If you ever see this all of my stuff is on my profile. It is nice to have people your age that get it and even months later I get the whole lie. I just don't even talk about it with my Mom... I am not so sure she even cares <- her issues. Nice to know there are people out there that understand we don't always have to be happy, this is a pretty crappy disease.

[MandaPanda2888]

Wow took the words from my mouth!

Hey there Kayla! I'm 24 too. I know exactly how you feel. I was just telling my gf the other day that I feel like my life has been robbed. Not only was I just diagnosed with MS on June 28th but my sons dad is refusing to let me have my son back. I'm not handling the stress well at all and my body hurts everyday. I also have struggled with depression in the past in and off since my adolescence and also a very long period of post partum depression after the birth of my son in October 2010. Now that I've been diagnosed, I wonder how long I've actually had MS.

The thing I really hate about MS is that many people think your just making things up, it's in your head, or your whining and making it seem really bad. It's very hard for people without this disease to understand the hardships we face on a daily basis because they don't see the struggle. They don't see the pain, they don't see the depression, and they don't see the anxiety. They don't have to feel that they're plans in life have been forever altered or changed. It sucks being 24 and forgetting everything within a matter of seconds, it sucks also thinking someday I may nt even be able to control my bladder or bowels. All of these things just plain SUCK. And it's not something 24yr olds should be spending their time worrying about.

However, there still is good things in life. Even though we were dealt ****ty health there are still blessings in our lives. I have a winderul father and friends pets son and gf. Even though they may not understand my disease they love me still. I have this wonderful board where I can come when I need to vent or ask questions and feel like somebody understands. I'm still an intelligent human being, I'm still my sensitive emotional creative self I'm still ME. I'm just ME who has MS.

At the risk of sounding cheesy I like the rebif commercial because they say...I have MS, MS doesn't have me. This is so true. MS May alter things for me but it doesn't make me a different person. I control who I am and quite honestly I refuse to let my disease define who I am, and I refuse to let it it completely control my life. Those plans I have to travel someday, and hike mountains, and backpack through Europe. They are still on for now.

Maybe when the time comes I won't want to or be able to. But for now, I'm going to continue to plan for those things and keep a positive outlook. I won't assume I won't be able to. Somedays it's hard I know. But we have to live with this and we still have LIFE left. that's a lot more then a lot of sick people out there.
Keep your head up and remember you aren't alone.

[KassieMorgan]

I understand completely! I'm 23, I have a beautiful 9month old daughter and was DX'd in April. I am having a very rough time accepting it and I get so angry when people tell me "Hey, at least it's not cancer!" I've heard it from EVERYONE, including a Dr.
I am of course happy it's not cancer but I feel like they don't think MS is serious enough for the reaction I'm having.

I've had a relapse five out of the seven months that I started having symptoms! I'm on my second round of Optic-N. and everything is getting worse. It's hard to stay sane and happy with no support and something so important (my daughter ) to constantly think about. Without her I would be in a very bad place! I'm more happy than I've ever been because of her but at the same time I'm more scared. I know it's going to take me longer than maybe most to accept this but I have to for my daughter.
It's rough being so young and being handed so much! Keep your head up and good luck!

[Snowball]

I'm a 21 year old who is in process of being diagnosed. I had a series of brain scans done and when the lesions were found I was sent to my neurologist.
To be honest I'm not scared of the dx as much as I have been of not having one. Either way you something is wrong.
I was found to have a musculature problem in my leg when I was about 15. Because of all the drugs and surgeries I had all the other symptoms I began to have were dismissed as side effects [these weren't small ones either - crippling pain, headaches, exhaustion, and throwing up meals, and later blood, daily]. It wasn't until that past 2 years that alternate tests began to be preformed. As I'm sure you all remember every test in the book comes back negative for a long time. My family (and quite a few of my friends) thought I was thought I was making it up and exaggerating the pain.
To have a doctor tell me that there is ACTUALLY something wrong, that he could point at, and that they could even start giving some relief to some of the problems is one of best things I've heard in years.
I do know what you all mean though. Even though I'm generally happy, people are always insisting that they know better and that the only reason I'm not cured yet is that I'm not trying hard enough or taking it seriously enough -.-
I will admit that that drives me pretty nuts..

[mommyto3angels]

I'm 32 was dx's 5 years ago right after giving birth to my 3rd healthy baby.... I know alot of women with MS who would love to be in my place and have had the chance to have 3 kids and be at my age before being dx'ed but I still get just as upset as you. It is a normal reaction. We all have times when we can accept our health and times when we want to cry,scream and throw things.


It's not something to be ashamed of. Go thru your feelings and get out of them, you will feel better in the end by dealing with them now.

[unsureofanything]

robbed, yes i understand that feeling

Hey There

I am 30 and was diagnosed two days ago. I can understand feeling robbed; it is a real feeling and does make it difficult to be happy and optimistic. But for me it's a future without hope of evading yet more serious problems, the hope that my adulthood would progress to something enjoyable, because innocence was already robbed of me at a very young age.

What I have been robbed of is the belief that all that work I did to improve my life and get past things actually means anything to my outcome. The universe has rewarded my hard work with an incurable chronic and potentially debilitating disease, where, hard work in the right areas now will only serve to make the best of a situation that I will never have control over.

On the other hand, I think I am gaining something I had trouble with before. I knew that life was uncertain, unfair and arduous long prior. What I didn't know was that I would ever have the opportunity to excuse myself of attempting to control it in vain. What I didn't know is that life was going to give me a chance to let go (I haven't done it yet, but I know I have to) of things that have made me very depressed and hard on myself. That it would give me a kick in the arse so severe that now, taking care of myself is not selfish but, something that I have to do to maybe prevent being totally dependent on others (which is something I fear, we are young, we are strong, surely nursing homes are for old people).

I did the right thing avoiding having kids until now, I wasn't ready. Of course I now worry that the clock is ticking and the longer I leave it the less ready I'll be. Maybe I feel robbed of thinking maturity would bring more confidence in my potential to parent. Or something.

So. I can understand that you feel robbed, perhaps for not the same reasons; and personally right now, I don't feel happy either. Having a depression history too I think puts us both at risk of those feelings anyway and on its own depression can be debilitating and chronic. But I take it that prepares us in some way for knowing we can survive in spite of chronic difficulties. You have the added benefit (if you'd like to call it that!!!) of seeing your dad go through MS too. You're unlikely to be as blindsided as somebody who never had a horrible thing happen until an MS diagnosis. That gives you (and I guess me) an opportunity to be resilient and that resilience gives you an advantage to deal with the depression.

I hope this counts as positive thinking.

Also, here is what I also know. MS is for me, like Richard Pryor used to say, "More ****". In spite of all my other difficulties I got a degree. I have used knowledge to help me and sometimes others. I have lost many jobs and had social issues perhaps due to misunderstandings associated with being chronically ill. But this also means I've worked in numerous kinds of jobs and in numerous sectors and seen different angles of society and aren't deluded by the idea that a job lasts a lifetime or that things are stable. That's the upside, the lack of certainty means an increase in perspective. An increase in perspective is a tile on the road to wisdom, I have some tiles and later I'll have more. Same is true of you.

We may be young and sick but our disease isn't a death sentence. So when we're older, we'll probably be wiser than our non sick peers. We are not weak....I know from my other problems already that we are a source of strength and inspiration for people who have it comparatively easy. They can't imagine how hard it must be for us. So when they go back to their (petty) problems, they've learned it's not so bad and they can handle it. We thus can help people just by having this problem.

In a confusing sort of way, we, the screwed over, are leaders.

Hope this helps.

[cjohnstone]

I feel your pain

I completey understand! I am a little older, 29. but that is still young. I have young kids and I am having such a hard time dealing with my dx. I feel like people forget about what I am dealing with. In the beginning my symptoms were really bad, I was numb from the chest down so that was obvious to them. Now that I am functioning better they think I am all better.

I am having the hardest time accepting that this is my new normal and I am probably going to have to deal with different symptoms all the time. I feel like no one around me understands at all. It is very emotional to go through all of this and to not know what is going to happen in the future.

It is very depressing for me too because I have daily reminders that something is wrong with me, whether it's tingling, the shots, my hair falling out (from the meds), etc. that keep my dx in the front of my mind all the time

[pnowsitall]

I have to reflect

I have the same problems, mainly with family.

Over the past year, I have been having money issues since wife moved out, had a diagnosis of MS 2011, people died in the family, basically you can say 2012 was the worst year ever for me.

And lately, I've expressed my intention to change my life, move somewhere else. All that I have been getting over the past months are guilt trips, oh you can't do that, if you do that, we won't have anything to do with you/.

How can people understand that we are sensitive to the "way" people talk. All the patronizing, guilt trip feeling, and preaching, is making me wanna go crazy!!! Family can sometimes say, all we want is to help you, that the only two people in your life are mom and dad....but sometimes they can be the worst.