Hello friends, My name is Maria and I finally convinced my self to creat an account and learn more about MS based on others stories and learn as I go. I officially got DIagnosed at the begining of this year. I do sometimes have mental breakdowns and I end up not having someone with me to talk about how I feel. It is very hard for me to open up with others that I know personally. It is like if I had a brick wall infront of me to where I dont let anyone else know what is going on and me being like that tends to beat me up in the inside and mentally hurts me too. SO please help me...
There is a reason why you do not want those around you to know what is going on with you, trust is an issue for all of us. To whom can you share your innermost secrets, fears, wants and needs?
When we are young we care about what people think of us, the image of us that they manufacture for themselves, not necessarily who we really are. We all want to be liked. And sometimes we think we have nothing of value to say, Can you believe, I was the quiet one? Never shared, the wallflower fading into the woodwork.
People who do not have ms have no idea what the experience is like, they simply form their own opinion of our world, whether it is close to reality or not is of no matter, they will think what they want to think. And your thoughts have not fully formed yet, you are slowly learning to describe what you are feeling mentally physically and emotionally, so we are here to listen to what you have to say, ms is unique for each of us and what you are feeling is better expressed than supressed, your computer brain has to hear what you are thinking before it can adapt to what is going on, so speak, there is no right or wrong, just what is and we can support you through your growth with living with ms, maria
I was diagnosed in 2011, and I completely understand what you mean by the wall. At first I only told super close family and friends. Since then I have only told a select few, but they are still close to me. About a month or two ago a person I've known for a few years, asked why I was walking with a cane (this person is not in my inner circle). Im not sure why I decided to just tell him about my MS, and was completely surprised that he said "no shi# what is your treatment plan? I was diagnosed in 2011" (same as me). Fortunately for him he's doing better than I am, but MS effects everyone differently. I would say just follow your gut if you share or not. But I will caution you that my inner circle of family and friends seem to treat me differently after I told them but some others don't treat me differently at all.
test the thin ice with caution, sometimes its thicker than we think and sometimes it's way thinner than we think.
I do know this, there are alot of people on this site that truly just want to be there for each other and want to help.
Just go one step at a time but as us firefighters know, check the floor before you step.
anything I can do to help you find your way in your MS journey just let me know.
take your time and just take it slow
You are NOT alone with these feelings and reactions. After I got diagnosed, I actually wanted to quit my job and become a recluse. I was scared, not knowing how to react to this shocking diagnosis and not wanting to share the news with anyone but my close family. After a while I finally realized that no one would think less of me if they knew I had MS; I was still the same person I was before I moved to Planet MS, but this time with answers as to why I would lose stamina at a moment's notice, why I would stumble over my own feet, why I would have my emotions swinging around like a tire swing, you get the idea.
Ultimately, you have to decide how you treat this disease: tell people, don't tell people, see a counselor, use holistic treatments, it's your choice. As you go forth, there will be plenty of people offering advice. Just remember that YOU are the one living with the disease. Not suffering, not dying, LIVING with MS. You have lots of buddies here to chat with, and you'll figure out how to kick this disease in the butt.
Hello Maria -
I am so glad that you are reaching out and getting support! In addition to this group, there may be a support group in your area where you can connect with others: Click on this link
to find your local support group.
We also have information for people with a recent diagnosis and information about the emotional symptoms of MS on our website that you may find helpful: Newly Diagnosed
If you have any other questions or would like to talk give us a call at 1.800.344.4867 (M-F 7am-5pm MST).
Stephanie, MS Navigator