This site has limited support for your browser. We recommend switching to Edge, Chrome, Safari, or Firefox.
Congratulations! Your order qualifies for free shipping You are $59 away from free shipping | your purchase supports kids with cancer

Need help finding your perfect system? Take our quiz.

Need help finding your perfect system? Take our quiz.

Episode 32: What I've learned from living with a disability

Did you know cancer is a disability? Once it's over, it's never actually over. This is what it's like to live with a disability — and what you can apply to your own life.


[00:00:00] Good morning, friends. Did you know that cancer is a disability? I did not actually know that, so my guess is you might not either.

[00:00:11] The thing is, once you have cancer, it's never really over. Even if you have no evidence of disease or you're in remission, as many people think of it, it's never actually over. There are a lot of side effects that you live with for a long time. There's increased risk of other things happening, like heart disease, depending on what kind of treatment you've had. And if you are like me and you're dealing with ongoing medication to keep the cancer from coming back, those things can affect you in a variety of ways.

[00:00:53] Cancer has affected me long term in a number of ways. The first — and the main one, I would say — is probably fatigue. That means that I get tired more easily than other people do, Other physical things that happen, like for example... Because I had all of my lymph nodes removed from one side, I can never lift more than five pounds on that side, or at least I'm not supposed to.

[00:01:23] It does seem to get better over time. (Like, I'm I'm definitely lifting over five pounds and it's not causing me any problems. But you're not supposed to.)

[00:01:33] Depending on the type of cancer you have, some people have body parts removed. I have my breasts removed, which obviously doesn't impact my day-to day-life a lot, as opposed to if I'd had bone cancer and had to have a leg or an arm removed. But it does cause me pain in my chest and in my arm sometimes.

[00:01:57] So all of that to say, you know, these are things that I don't think a lot of people think about when they think about cancer survivors. They kind of think, "OK, well, you had a really rough year of treatment and now it's over." But a lot of us are living with physical side effects, emotional, post-traumatic stress, all kinds of things.

[00:02:19] So I wanted to share today what I have learned from living with a disability.

[00:02:26] Because I have a disability, I really don't have a choice but to listen to my body. That means that if I run out of energy at two p.m., like, I can't fix it. I have to relax. I have to take a break.

[00:02:42] I don't have a choice but to work less and take those breaks when necessary.

[00:02:47] I don't have a choice but to deal with my emotions when they come up, because if it's related to my medical trauma or, you know, anxiety related to cancer, those emotions completely take over everything.

[00:03:03] In summary, I basically don't have a choice but to accept my limitations. And my family doesn't have a choice either.

[00:03:12] I have to set boundaries with people, including my family members, because if I want to get things done that are important to me or that are on my to do list, I have to protect my energy. I only have a certain amount of it. And if I spend it doing things that I didn't plan on or that aren't important to me, then I don't have enough energy left for the things that do matter to me.

[00:03:39] There are a lot of things that people can learn from people who are dealing with disabilities. And namely, I think the main thing is this: just because you can do more work or more things doesn't mean that you *should.*

[00:03:57] And boundaries is the other thing that everyone could benefit from. Basically, we as parents especially, are kind of trained to give and give and give to our kids, at the expense of ourselves. A lot of the time, if we are married, we are giving to our partner. Some of us are better than others at laying the boundaries, saying, "I can't do that for you" or "I won't do that for you," or "that's your responsibility." But many of us feel guilty doing that. Having a disability in some ways has been a gift to me, because I don't have a choice but to lay those boundaries.

[00:04:47] It kind of reminds me of going through my divorce and sharing custody. If I had not been forced to share custody with my ex-husband, I don't think I ever would have taken time for myself. I would have spent all of my time with my daughter and felt horribly guilty for *not* doing that, because it would have made me feel like I wasn't as good of a mother.

[00:05:13] But not having the choice gave me permission to not feel that guilt anymore.

[00:05:20] And the truth is, the guilt is a choice. We can choose to feel guilty about it or we can choose to not feel guilty about it. If we're going to make the same decision anyway, then the guilt is kind of pointless. All it does is weigh a lot, make you feel terrible, and not allow you to enjoy the things that you are doing. If you have decided you are not going to work past 5pm, if you have decided that you are going to spend that time with your family, and then you go home and you spend that whole time with your kids feeling guilty, you defeated the purpose. You're still not enjoying your life.

[00:06:06] And guilt doesn't doesn't serve a whole lot of purpose. It usually is there because we have a sinking feeling that we're doing something wrong. But if we've decided that this is something that we're going to do because it is right — even though it's hard — then the guilt is completely pointless.

[00:06:27] I would like to encourage you to think a little bit more about your needs, both physical and emotional, and think about whether you're doing things because you can and you think you should, or because you actually *want* to.

[00:06:46] I think I would have spent a lot more time working because I physically *could* at my last job, and I would have sacrificed a lot of things. And that doesn't mean that I *should* have, but I probably would have. So if you think about your needs - really *think* about them - and say to yourself, "I need to spend time with my family without thinking about my job . . . I need to, you know, relax in the evenings without doing this bedtime routine nine thousand times. I need my partner to step up. I need more help."

[00:07:32] Just because you can do it yourself doesn't mean you should. And if you act as if you have a disability and you really don't have a choice, then you're forced to get a little creative. You're forced to figure out how you can do less because you need to do less. And in reality, we all need to do less.

[00:07:53] There's way, way too much stuff that we are doing, things that we've piled on our plates because we feel guilty. I would like to see more of us taking things slower, and giving ourselves a break, because we need to. Just because you can do more doesn't mean you should.