Hi, my zebras in spoonies! Thanks for coming and visiting me. I’m glad that you’re spending your time with me.

Today I’m going to be talking about guilt, because the reality is that the majority of people who have chronic illness experience guilt, lots of flavors of guilt, but we feel guilt. It’s kind of an interesting phenomenon when you think about the fact that nobody chooses to have a chronic illness and yet we feel guilty about it. I just wanted to explore what we feel guilty about and what we can do about it.

One type of guilt that we experience is relationship guilt. When we are in a relationship, we worry about how our illness affects our partner, and we feel guilty when our illness has a negative impact on our partner. The reality is that when you are in a long term relationship there will always be times that things that you do in your life will have a negative impact on your partner. When you’re sick, when you’re having a bad day, when you’re struggling with stuff; these things are going to negatively impact your partner, and it doesn’t matter if you have chronic illness, or not, that’s the nature of being in a relationship. But when you have chronic illness, this is kind of magnified because you take all that normal kind of relationship complexity, but you also add in this physical illness, and maybe even mental illness stuff into the mix and it just makes it much more complicated.

So what can we do about it? When we’re feeling guilty about the way that our relationships are affected by our chronic illness, the first thing that I will always recommend (in every relationship whether you have chronic illness or not) is to keep open lines of communication. It is important that we talk to our partners and that we give them time and space to communicate with us about the ways that our illness is in fact effecting them, rather than projecting our feelings on to them. A lot of times we fear that our illness is negatively impacting them, and it actually isn’t affecting them as negatively or even at all in the ways that we think that it is. It’s really important that we give our partners, an opportunity to speak for themselves rather than to assume that we know what they’re thinking and feeling in context of our illness. That’s the first thing, I think.

The other thing that is important for us to do in context of our illness is to make sure that our partners are not our pillar of emotional support. It’s very easy to turn to this person whom we trust very much and who is very involved in our life and to lean on them for all of our emotional support and all of our emotional needs, but this is a really demanding thing to ask of anyone in a normal relationship. It is healthier to go to multiple people to have your emotional needs met. You have your partner, but you also have friends and family members, and you lean on these people in different ways in different times for different needs, so your emotional needs are kind of spread out between these individuals, and we need to make sure that we’re continuing to do that and one of the ways that we can ensure that we’re not overburdening our partner with our illness is by making sure that we’re taking our psychological processing needs not to our partner but to either a psychologist or to a support group, you know, a place that is safe, and that we can say what we need to say and we can be understood and we can get stuff off our chest, without unloading on the person that’s nearest and dearest to us.

I would encourage everybody to make sure that you have open lines of communication. And I would also really encourage anyone with a chronic illness to find some support groups, and if you can’t find a support group, then to get into some type of counseling to have an option to be able to talk to someone other than your partner. And be sure to ask your partner what they feel they need to be supported through all this. They are the experts on them and they are going to be the best equipped to tell you what they need. Be sure that you are asking them.

Another type of guilt or another time that we experience guilt is when we have to cancel or change plans that we’ve made with friends and family. It’s pretty common. You don’t know when you’re going to have a flare and you don’t know how you’re going to feel three days from now. You don’t know how you’re going to feel three months from now, and plans are just kind of made ahead of time, and then things come up and you’re not able to go or you just feel like crap suddenly in the middle of an event and you have to like say “sorry dude I gotta leave.” I’ve been known to fall asleep right in the middle of a gaming event and my friends luckily are super supportive and have never given me any real grief about this.

How do we deal with this? Again, with all relationships, keep those open lines of communication open. Don’t assume that your friends know what’s going on. Be honest about why you’re cancelling or changing your plans. If you’re sick say so. Let them have a chance to talk to you about your chronic illness and the way that affects your relationship with them. This is important, don’t assume that you know what’s going on with them just the same way that you don’t want to assume what’s going on with your partner. We don’t read minds. We need to let other people speak for themselves. We don’t want to be projecting our own insecurities, on the people around us. It can really negatively impact our relationships.

The other thing that I think that can be helpful is to allow ourselves to be a little bit more vulnerable. A lot of times when we’re around other people we try really hard to pretend to be a able bodied, not sick person and we try to make it so that other people around us, our friends and our family, don’t see our chronic illness symptoms, and maybe we need to allow them to see us sick and struggling with our symptoms so that they can better understand why we need to cancel.

And you know something else to consider? You can consider just inviting them over instead of out right cancelling. It is another option instead of canceling. We can say, “you know, I’m really way too tired to be out and I don’t have the spoons for getting dressed and showering and being out in public and going to a restaurant and doing a movie. Would you like to instead come over to my house and hang? Just the two of us. But just know that I might fall asleep while you’re hanging out with me.” That will give them the signal that you value their relationship with you. And it’s not that you’re trying to avoid them, it’s that you just don’t have the energy to do the thing.

Another type of guilt that many people with chronic illness experience is parental guilt. When you have chronic illness and you’re a parent, you often feel guilty about not being able to keep up with your children and not being able to attend all of their events and play with them every time they ask. Kids have an abundance of energy and when you have chronic illness, you just can’t keep up with that. How do you cope with that? The first thing is is that I think that you need to put it into perspective. Children are very, very resilient. And they don’t look at things the same way that adults do. Their normal is whatever they’re raised with, so they don’t have this expectation of what a normal adult looks like. You are their normal adult, so you’re not breaking any expectations that they have, because you are their normal. That’s the first thing to kind of keep in mind.

The other thing to keep in mind is that you can offer children alternatives, and a lot of times that’s good enough, like kids might want to go outside and run around and that’s their first choice of going to the park with with you, but if you’re too tired that day to go to the park, maybe instead, invite them to have a tent that you build in the living room and have a reading or story time or playing RPGs, or video games, or something else that is at a level that’s equivalent to the number of spoons that you have.

Again, I think that this is important time to keep communication lines open. I think people often forget that children are human, and that we can talk to them just like we talk to the adults whom we have relationships with. I mean we have to keep in mind that they are children and that they have a different perspective and they have less emotional maturity. But, you know, they can still understand what it is to be sick and they can still understand having to delay things. I think it’s important to give them a chance to speak for themselves the same way that you should with the adults in your life. Don’t assume that you know what they are thinking or feeling just because they are a kid. Their hearts and minds are just as complex as any other human.

I think that it’s important not to make promises that we can’t keep. Instead of saying, “I promise I’ll make it to the game this time” say “I am planning on going to your game. However, it’s possible that I won’t be able to,” set them up for that possibility, and if you can’t do that thing that day, do something with them when you do have the spoons. Honestly, I don’t think that’s a bad approach for the adults in your life either. It never hurts to be clear and up front with people that there is always the possibility that you will have to cancel.

I think that it’s just very true in my own personal experience raising a kid that if you are constantly reaching out to them and offering your time when you have the spoons to do so they’re going to see that gesture. I mean, when I was raising my daughter, we would have girl night on a regular weekly scheduled event, and it was quite often that I fell asleep during girl night. We would start watching a movie and I’d be done, snoring. Or we be playing video games and done, snoring. It was a really common thing in my life because of the chronic fatigue that I experience. But she also saw that, I still scheduled time with her every week, and that when I came home, I still checked in with her and when she got home from school I tried to check in with her, and anytime I had spoons and free time, I tried to spend time with her and she saw that I was genuinely interested in spending my time with her so she was able to see that it wasn’t about wanting to spend time with her, it was about just being so tired.

It’s about allowing your children to see that you’re sick and being a little bit vulnerable in front of them and sometimes as parents we’re afraid to be vulnerable in front of our children, because we don’t want them to be scared, and we don’t want to worry them. But I think that it worries children more when they don’t understand what’s going on. I think that it opens the door for children learning compassion and empathy. When we allow them to see that when you’re an adult you don’t magically become a perfect person, that we’re still flawed and we still struggle and we still need support, it allows them a window into seeing what it’s like to be human. We are their example. We demonstrate to them what an adult is supposed to look like. If we’re showing them, in our vulnerability, that we can be tired and we can make mistakes and that we don’t always do the thing; then they know that they don’t have to be perfect, either and they can feel more comfortable with their own humaneness; whatever mix it is that they have. I think that it’s good for our children to see us vulnerable, even though it can be difficult and uncomfortable to allow them to see that.

Then there’s this type of guilt, where we feel like we’re a burden to other people. And this comes from the need to ask for help, related to our chronic illness, and I think that, unfortunately, society has a stigma against people who have disabilities or who have medical problems and makes asking for help, a bad thing, when in reality, humans are social creatures and we are only successful when we work together and we all at some point in our lives need help from each other whether we have chronic illness or not and leaning on each other and getting help from each other is a normal part of this social contract.

I think the first part of being able to cope with this source of guilt is to be able to put this sense of guilt, into a more realistic perspective and to remind ourselves that it is not only okay to ask for help it is normal and it is healthy and it is what helps bind us together as a society, as a community, and it’s the glue in relationships. When we help each other and when we foster each other and when we make sure that we’re holding each other up, that’s what builds a good community and that’s what unites good relationships, and that’s when we as humans are at our best and our strongest. There’s nothing wrong for asking for help. That’s the first thing that I think that we need to do: remind ourselves that it’s normal and that we’re not somehow this aberrant horrible human being, because we’re asking for help, then I think that the second thing is to try to keep it into that perspective.

A lot of times we over magnify what it is that we’re asking for. And we over magnify how much of a burden we are to our partners and our loved ones. And again, this is where it’s really important to have open, honest lines of communication with the people around us, and it’s important to utilize multiple channels of support rather than a single individual, and the more people that you can lean on for support, the less likely any one person is going to feel overburdened or strained by you asking for help.

Another kind of guilt that kind of comes to mind for me is that a lot of times when you have disabilities and chronic illness you aren’t able to financially contribute to your family in the household, the way that you would like to. You’re not always able to work. You’re not always able to work as much as you would like to. You’re not always able to do the job you want to do or get the highest paying jobs. A lot of times you’re not able to put in the overtime or you have to call out which are all factors that play into whether or not you can get a promotion. So yeah, a lot of times we feel guilty about not being the big breadwinner for our families.

I think that we need to remind ourselves that money is not the only thing that a person can offer to a community and to a household, there are other things that we can do to offer something positive to the community and household that we’re living in. I think that we need to put this in perspective, and we need to look at are we over magnifying this and have those conversations with people and we need to have an honest look at ourselves about what we can do to contribute towards the household, whether that’s, you know, chores or a cheerful presence or art or music. Those things seem like they might not be important but I think that it’s important to remember that art and music, are the core of how humanity processes all of those intangible things and that’s why we have art and music, even during some of the most darkest and horrible times in history. So don’t underplay the value of those things.

So yeah. Guilt is a big thing when you have chronic illness, and I think that sometimes we shed guilt even onto ourselves. Instead of feeling guilty about what we’re doing with other people I think that sometimes we feel guilty about not meeting our own personal expectations like we’re not living up to some imagined potential. I mean we all had dreams when we were children and we all imagined who we were going to be when we grew up, then we all have like this perception of where our life’s going to go and then chronic illness hits, and that changes that whole trajectory and that changes that vision for the future, and sometimes I think that we feel guilty that we can’t continue on that path, and that the trajectory has changed.

I think that it’s important for us to remind ourselves that changes in trajectory throughout life is a normal part of being human. No one as a child thinks this is what I’m going to be and this is who I’m going to be, and then does exactly everything they imagined throughout their life to become exactly the person they imagined as an adult to do exactly the things they imagined as an adult. That doesn’t happen. We’re just not built that way. As we grow and as our brains develop and as life experience happens and as things happen to us, we change, and as we change the trajectory we’re taking through life also changes and that’s just a normal part of being human, and it isn’t that we’re somehow failing because we didn’t meet the end goal of the previous life trajectory, it’s just a natural part of being human.

I think that we need to forgive ourselves for being human. I think that we need to give ourselves permission to be human. None of us are going to be perfect and none of us are going to ever reach this imagined high perfect pedestal potential that’s not what humanity is really about. And none of us decided to have whatever illness it is that we’ve got. So, we need to stop blaming ourselves for things that are out of our control. We didn’t decide on our DNA. We didn’t decide to be sick. Things happen in life and then we have to deal with them. That doesn’t make any of those things are fault. They are just things that are happening.

Thank you for coming and visiting and hanging out with me today, and I hope that as you go through your week you can be a little bit kinder to yourself and set aside some of that guilt and please take care of yourselves. Bye! I’ll see you next time.

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