Invisible Disability, Visible Doubt

Colleen shares some of her thoughts, talking about what it feels like when people question disability when a person happens to look well, and how those “compliments” feel to a person with MS. Beginning with the 'invisible illness' issue ... something that needs talking about.

Feel free to share this episode, please do, and for the other episodes that have gone before - please listen to other people's stories.
And of course, if you'd like to share your own story on this podcast, you can contact Colleen via email at msmspodcast@proton.me 
This is also a link to buy me a coffee, I'd appreciate that (it's not real coffee, if you choose to contribute to help me keep this podcast alive I'll receive $5 from you, thank you!) 

Transcript

Welcome And A Personal Update

Speaker 0:05

Well, hello and welcome. I'm Colleen Daniels, and this is the MSMS Many Stories of Multiple Sclerosis Podcast. Thank you for being with me today. I did have HSCT, as you most likely know. I also, of course, have MS. It's still there. I haven't gotten rid of it totally. It's still there. I've certainly had a lot of improvement since HSCT, and that can't be denied. But I'm still a person with MS. That's the only difference between me and the rest of the world. Oh, I suppose it's not the only one. There's a lot of different things. But MS is a differentiator, shall we say? Now today I think I'm just going to talk about a few things. I've got notes that I've been writing, and I just thought I'd just talk because conversation's good. I thank you for listening to me, I really do. I appreciate that. So. some of the notes I've got scribbled here. I was thinking about the issue of when people question whether you're really disabled, because you happen to look pretty good that day. And we have good days, we have bad days, and sometimes those days stay with us. And you know, uh that that is how it is. But when we do feel well, if you happen to be a person who is looking good some days, feeling well some days, not so good the next, not looking so good because you don't feel so good, you know, those comments have an impact. And they might seem harmless to the person that's saying them, saying that you look well, you know, it's a compliment, isn't it? But it's kind of strange. But why do people feel comfortable questioning disability? You know, I've sort of gone around in circles there, but why do people feel comfortable questioning our disability? Well, the people who say, and I think we've all heard it at some time, people have even been more direct and said, you don't look disabled. It's like, and even not directly saying it, they are questioning it, aren't they? And so it feels intrusive and it can feel dismissive, and it leaves people feeling like they have to explain or justify themselves simply for for existing. Those sort of things are I just wanted to sort of put it out there because I I wonder why people feel so comfortable doing that. It's not necessary, is it? But another example is when people kind of assume that disability looks one particular way, that if you can walk, if you smile and you sometimes work even, or you might laugh and things like that, and people kind of assume that your struggles aren't really real, don't they? But MS doesn't disappear just because someone can't see it. For certain, MS does not disappear just because it can't be seen, it's not sort of immediately obvious. But those the words of other people have their impact. And there's also another experience that many people with MS talk about. I mean, I've or I've heard it, I've seen it, you know, online we see people talking about being told that they're not disabled enough. That is so weird. Like what is enough? If you use a mobility aid one day and not the next, people can question. They question that. It doesn't make sense to them. If you park in inaccessible space but you can still walk, people will give you that look, you know, the look. And if you cancel plans that you might have made because of the fatigue that you have, people assume Well they kind of think that you're unreliable then, because you made a plan and then you cancelled it. So we just don't get that. Invisible illness can create an exhausting pressure to constantly justify ourselves. So I kinda wanna say you you don't well we don't, nobody, none of us, owe people proof. We don't owe anyone proof of our disability. You don't have to perform it, you don't have to perform disability in a way that makes other people comfortable. Because MS does fluctuate, that's just the nature of the disease. You have a good day, you have a really bad day, you have an okay day, you have a dreadful day. But those good days don't uh blot out, they don't erase the hard days. They don't. And I also want to talk about um something I can't plan it for a word to, sorry. But sometimes after hearing society, those messages that are out there, those signals, after we sort of hear them long enough, we start to shrink. We shrink ourselves we apologize because we need rest. We stop asking for people to to help in a certain way. We stop asking for things to change if if something could be changed a little because we can't manage something. You know, perhaps if I don't know, I can't think of an example. But you know, when there's something that that you can't do because of a certain situation, if they would just change something, you could do it. I'll show you all have an example. And we we do, we feel guilty for using our mobility aids. They can get in the way, can't they? They get in the way of other people. Never mind that we have to struggle to carry them around and lift them and move them and push them and all that sort of stuff, but we feel guilty about it, and we push ourselves until we crash, because we don't want to be an inconvenience for anybody. And somewhere along the way, many of us kind of absorb the idea that that needing help makes us less valuable. I'm sorry, this is sounding terribly depressing, and I don't want to be. I'm just sort of pointing the issues out there, but I'm hoping that people living a healthy, non-diseased life are listening as well. I really hope they are, because it helps people to see those things that they don't see. And needing support is part of being human. It really is. It doesn't matter what your health is. Needing support is part of being human. Every single person on this earth will need help at some point. Disability is not failure. Depending on others is not weakness. Accessibility is not special treatment. It's inclusion. And inclusion matters because disability is not rare. It's not other people. It can happen to anyone. I mean it happened to me. I wasn't expecting it. My whole family's healthy. Like what? You know, and there I was, and there I am, and here I am, with multiple sclerosis. So it can happen to anyone. I'm nobody special, I'm just an ordinary person, and it can happen. It can happen if you're rich, you're poor, anything. Through illness, injury, aging, or circumstance. Disability can happen. And creating accessible communities and events and attitudes and workplaces, of course, benefits everybody. And one thing that I'll say, people with disability should not have to become inspirational. I'm sorry, but it's a terrible thing. I mean, people have said that I'm an inspiration, and I really appreciate that. I think it's lovely, and I'm really grateful for people who think that of me, and I hope that it helps or has helped some people, some of my improvement that I've had, but you don't have to overcome your MS to deserve respect. You don't. You don't need to stay positive every minute, and you don't need to educate every single person who says something insensitive. It's exhausting enough living with MS. It's exhausting. But despite all of that, I do see extraordinary resilience in the MS community. And not because people are pretending things are easy, but you know what? It's because people keep adapting. We do. We have a challenge, we adapt, we work around it, we find ways. We do. People keep adapting, they keep showing up, they keep rebuilding, and they can still laugh. They have they have humour still, and they support each other, and there is enormous strength in all of that. If you're listening and you've experienced disability, uh I don't like to use the word discrimination, but if you but if you have experienced that, if you've if you've been made uncomfortable, if you've been made to feel that you that you don't have value. I want you to know this. You do. Everyone here in this community, every other listener who's listening in believes you. We know that you are valuable. We know your experiences are real, we know your struggles have been real, we know that the fatigue you feel is real. But your worth has never depended on productivity or mobility or other people's understanding. It doesn't depend on that. You don't need to keep proving anything to anyone. You deserve respect exactly as you are. I think I'll leave it there. Thank you for spending your time with me today. Feel free to share this episode, please do, for all the other episodes that are here that have gone before. Please listen to other people's stories. They are so. they are inspirational, I think. So many of those stories and the courage that we hear and the battles that people have faced and come through, and the fact that they want to share them, that's that's just beautiful. It's just beautiful. That's the support that's there in our community, people who want to share their stories so that you can hear them and maybe take something, take something from it that helps you with your life, helps you move on through your day when you're having a tough day. And of course, if you'd like to share your own story on MSMS this podcast, you can contact me via the podcast details in the show notes that you should find. Um, and that the email is of course MSMspodcast at Proton.me. And I'd appreciate support, there is a link also to buy me a coffee, I'd appreciate that. It's just five dollars for one coffee. Of course, I don't get the coffee, I do receive five dollars, and and I truly appreciate that. I was gonna say goodbye, I am saying bye for now. Thank you so much for listening. Do come back, there'll be another episode next time I think of something to talk about! Thank you so much. Bye now,