Messages to Family and Friends

Please understand what MS is. Please understand. It is important for family and friends to read and understand what MS is. It is not, it is just another disease. Don't take it as a never-ending, the end-of-life disease.

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I would have gone into a black hole if people surrounding me never understood the pain I was going through or the trauma I was going through. So, people need to understand that it isn't, I'm not able to walk because I am having pain in my leg. I'm not able to walk because I don't know how to walk. So, making them understand, people who are close to you, understanding is a very important thing.

Be patient. I'm going to get a crabby, and I'm going to get tired. And you know, just to be supportive, like I'm going to trip up. And I think that's where my husband has probably gotten to the point where, if I do trip and fall, I'm frustrated. I'm angry.  And so, his reactions then are different. So, he's not getting mad at me. He's not making fun. You know, I mean, we do eventually laugh about things. And you know, it is what it is.  And he knows it's not my fault. So, he knows it's not anything that I'm doing. So, I think that the patience and just knowing that I'm going to need help, and I'm not going to want to ask for that help.

And I think most people want to help. But they don't realize the downside of doing that if the person is still capable of doing it, because then it takes away their confidence and their ability to be able to perform whatever they're trying to perform. And I have had friends jump right in. And it's like, wait a minute. You need to back up. I can do it. I just move a lot slower than when I did. And I think for them to have patience, because people, I think, with MS and a lot of the different disabilities-- they're capable of doing a lot more than what I think people give them credit for. But it's at a slower pace. I mean, I think that was part of my problem with a couple of my friends I used to bike with. We used to all take off and bike at a faster pace than what I can go now. So, they'll take off, and I'm still way in the back. And I don't know if they feel compelled that they have to stay back with me and not go at their pace. Same thing with walking. I've told my friends, when we're out, go ahead and walk at your own pace, because everybody has their own pace and that they don't necessarily have to stay back to walk my slower pace. In fact, I had a friend a couple weeks ago tell me that, because she stayed back and walked with me, her thighs hurt worse because she slowed her pace down so much that she ended up working her thighs muscles more than her whole leg of what she was used to doing. So, I think if people continue doing-- just understand that people with MS and any type of disability, they're going to move slower and just have patience. And I think that's the bigger thing is just having patience and letting them do what they can do. 

First of all, just to be there for the person and to listen. I know that we all have a tendency, well, let me do things for you, let's-- so to listen to the person, and for the MS person to truly be honest and tell the family and the friends if they do need help or what they need help with. And to understand that, sometimes, we can't even explain what it is, the symptoms that we're feeling.  We just know that, I can't think, or I'm tired, I'm fatigued. And it's not associated with anything more than, that's just what I'm feeling at the moment. And so, to be sensitive and to listen, to be sensitive. And if the person asks for your help, then to please offer it. But otherwise, just be there. 

Well, the first thing would be not to impose their own judgment and not to offer their treatment. Because it's actually, it is a little bit annoying. And I know that people, many people are just trying their best and trying to help you. But like always offering solutions, thinking probably that the person cannot think for themselves and cannot evaluate their options. So of course, every person-- even the same for going into the wheelchair, as if you know in this situation, I never heard of it and I never considered this option. But obviously I made this choice, so it is right for me. So, yeah, why would they think that they have the solution.
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So obviously, it's nice when people offer their suggestions. But again, to insist on it would probably not be right. And somehow, treat with more respect to the fact that people have probably considered their options. They made choices that are best for them. Yeah, so that's the main thing. 

I would just say the best thing that you can do is just be there, like physically present for the person, and listen, and that everyone's experience is different. And again, the most commonly reported symptom is fatigue, and fatigue doesn't sound particularly medical. It just sounds like you're tired. Go take a nap. But if you're just understanding and present and supportive, I think that that goes a very long way. Just listen to what your loved one has to say to you and don't judge what they're saying, and you don't necessarily even need to give advice. Just listen and believe.

When they say they're not feeling well, maybe just drop off some food so they don't have to cook. Or mow their lawn. If you happen to drive by their house and see their grass is, like, a foot high, maybe you should just mow it. That was an issue that I had.  Sometimes people with MS aren't going to ask for help because they have too much pride or they're too embarrassed. And sometimes you just have to give them what they need. You just have to open your eyes and look and see what they're struggling with. Maybe the dishes. My best friend would see the dishes piled everywhere, and she would do them because I couldn't stand up long enough. So, she would come in and do them. She would clean my house. And I say, no, no, no, no, but I was very grateful. Sometimes no means yes, believe it or not. 

Don't be over-accommodating. You might think they want you to do whatever you can do to help, but in reality, they probably want to be able to prove that they can still do things on their own and they don't have to rely on you, because more likely than not, they don't want to be a burden to you, and they feel like a burden every time you offer to help. Be there for them if they need help. If they ask for help, help them. But don't always offer to help, because you're probably hurting them more by offering than just letting them do it themselves. 

My friends do, so they're more like, "Hey, how are you doing? You didn't look like you were feeling great the other day." They don't do that. So, I guess for family members, don't assume that your strong family member is doing OK. Ask them, "how are you really?" And you'll be surprised what you get.

Kind of the same thing I would say is, you know just-- you know just be present and listen. You know-- just don't forget to include them, but also, at the same respect, understand that when you include them, they may or may not be able to be-- attend because of how they're feeling that day or that hour, because it changes.  
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You know, but yeah, you know just basically, don't forget about us and think that we don't want to do things. But we might still be adjusting to the fact that we can't do something, or we might be having a bad day, a bad MS day. You know but don't stop including us.