A concern

[Tjthurb]

Hi, I'm Teresa and I was diagnosed with MS in 2010. Doing ok, but have day's where it's not that great. Just one issue that I have, and that is I'm not sure my immediate family truly understands what is really going on. What to do?

[Peppard]

My Dr gave me a DVD for my family to watch about MS and how it affects the body. I think that helped them. It's such a hidden condition in the fact that you may look great on the outside but inside there are so many things going on physically and mentally. Keep your family up to date on how you are doing and how you are feeling. Visually obvious: my right leg is affected by MS (foot slapping etc.) I call it my stupid leg, so when I talk about it my family knows that I'm having difficulty that day without seeming to complain or depressing them. I know it's silly but it works for me.

[rlh1974]

Tjthurb Hi Teresa. First HI! Welcome to THE BEST support chat type place on the ole' interwebs. The people here are amazing! Like Peppard said getting any and all resources from your Dr is a great start. Also, multiplesclerosis.net is a great website to direct them to. It explains exactly what MS is and what it can do to the human body. I will say this. People including family are going to know someone who knows someone who has an uncle with MS and it doesn't affect him that way. Blah blah blah. The plain fact is, you don't know until you know. Does that make sense? This disease or as we like to call it on here, This monster stinks especially getting friends and family to understand. They will start to understand more and more as time goes by and things become more obvious. I pray for you that things don't progress. But like @Peppard said. Keeping them informed is the best thing you can do. This disease effects the entire family. Except, they don't normally think it should. I pray you find a way to communicate what you are going through to them and that like my family they understand and are supportive!

Sorry, my answer was a bit negative. It's just after the last couple of years especially before I became disabled. I had terrible people I worked for that had no empathy and did not understand nor did they care to. So, I can be cynical. But my family on the other hand is amazing and all have taken the time to read and go to websites i send them and try to understand to the best of their abilities what it is I go through. I forward them articles and blog posts I find that are helpful. Things from this site, and others. That helps a lot.

So again, Welcome, we all look forward to getting to know you!

Rob

[Tjthurb in reply to rlh1974]

Thank you for your response.

[Fancy1959]

Hello Tthurb,it's Fancy1959 and I would like to welcome you to this awesome chat room and our extended family. You have found a safe place to come and ask questions, voice concerns, or simply speak to others who truly understand. We have some of the most caring, compassionate, and time people in this chat room that you will ever want to meet. With almost 2,000 members you will get a multitude of the answers and hopefully we can help with your dilemma.

I would encourage you to do a couple things. See if some of your relatives or parents will come to your doctor's appointment with you where they can ask questions and find out first hand from DMS expert. Next make sure you have reading material on the disease. Much can be found at your neurologist office and typically there are even pamphlets about caregivers in what the patient is going through. They're small pamphlets that are 10 to 15 pages so they typically are easy to pick up and browse through quickly. Encourage your family to do so. And lastly in our chat room we'd love to have caregivers and families join and talk to people about their MS and what it entails. It becomes hard to deny MS and all it entails when someone speaks to dozens of people that have similar experiences. It's basically overwhelming to the uneducated to find out the extent and the numbers that MS truly effects.

I'm sure as you get more responses you will find different ideas to present to your family. Hopefully, some of the ideas will help you to reach your family and educate them on your MMS and all it entails. Until we speak again please take care. I look forward to speaking to you in the near future. And please remember that together we are stronger!

[Tjthurb in reply to Fancy1959]

Thank you for your suggestions

[Jesmcd2 CommunityAmbassador]

Hi Tjthurb trying to help family members to understand something that seems to change with the wind?😊 Good luck!😄 joking.😄

Communication is the key. You have good days and MS days, and we all have to live together.

mymsaa.org has a booklet out that might help called, About MS

An Overview of Multiple Sclerosis (MS), Including Symptoms, Treatments, and Research

mymsaa.org/publications/abo...

It might help explain things more clearly for you.😊

J 🌠