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Tips on Overcoming Shame Around a Chronic Illness

The transcript can be found under the video.

Have you noticed that you're having feelings of shame overcome you?

When you're dealing with a condition like POTS or any other chronic condition, it's not just the physical symptoms that are tough to handle but it could also be emotionally difficult to handle.

For example, some statements that I'll hear from clients will be things like:

"I'm ashamed that I have to go to the doctor yet again, and I didn't get better and I have to tell them again that it's not in my head",

"I'm ashamed that I have to go to my doctor appointment in a wheelchair or using any other assistive device but I don't look that sick",

"I'm ashamed that my tests came back clean there's clearly something wrong".

That's just an example relating to the doctor but it could also happen with friends or family members.

"I'm ashamed that I'm still not better",

"I'm ashamed that I have to change my plans with my friends last moment",

"I'm ashamed that I have to order different food at the restaurant".

This feeling is unfortunately quite common for those battling an illness and today I would like to speak with you a little bit about ways in which shame shows up, as well as ways to slowly disarm that feeling of shame.

First of all you might be wondering what's shame and what's guilt? These two are often interchangeably used, but they're not the same.

Guilt is the feeling you get when you did something wrong or you think you did something wrong. Let's say you said something mean to somebody and you feel bad, I did something bad.

Shame is the feeling that your whole self is wrong it's connected more to who you are, so if you said something mean to someone you might be feeling ashamed that you're the kind of person that would do that. I am bad versus I did something bad.

There's a few different things that make this feeling of shame get worse or persist. It doesn't happen for no reason. When you get sick you might be asked questions like "So, when will you get better?" People want to know the timeline and sometimes when it takes too long, they will shove the blame onto you. There's this cultural belief that you did something wrong to get sick. That it's your fault that you're ill and then inversely that you're not trying hard enough to get better.

Now of course this could not be farther from the truth. This is one of those things that only once you've been through something like this can you begin to understand what it's really like to have an illness like this. That no matter how strong you are and it doesn't mean you can just get better.

But hearing comments like this can internalize that feeling of shame that you're not doing enough. Maybe you now look a little bit differently, you might have lost or gained weight or maybe you're using a mobility aid. You might find yourself being anxious about how others will perceive you. What if someone makes a big deal about your disabled parking spot since you don't look disabled? You then start becoming a pro at trying to hide your differences maybe you minimize your needs, you don't ask for what you really need.

For example, when walking I used to fatigue very easily because of the symptoms and I would need to sit down pretty often, but instead of saying that I need to sit down, that I'm tired and that I'm not feeling well and then my heart's acting crazy and that I feel overheated and all these other symptoms that I had, I would instead say "oh, let me just I have to check my bag or I have to drink some water or I have to tie my shoe laces or there'd always be some kind of excuse.

Over time, this takes up mental energy because you're not truly there, you're not present, you're thinking about how others perceive you, you're also hiding your true self in the process since there is part of your true self that at this moment does need these extra accommodations.

It creates this core belief within yourself that you're not worthy to be seen for who you really are. This over time, creates stress, which actually makes it almost worse, it gets you also in the cycle of shame where you feel ashamed and then you feel ashamed for feeling shame.

I hope that gives you a bit of an insight into how shame works. Now let's talk a bit about how you can begin to disarm some of this shame.

The first step is to identify. It's always the first step has to do with awareness. Think back to an episode where you might have had this feeling previously, maybe you had it at a doctor's appointment or when you were hanging out with a friend.

Where was this feeling in your body? Was it in your heart? Was it in your arms? Was it in your stomach? How did it feel? You can even pause this video to reflect on this. Now, you know where and how shame feels. So, you can identify it better in the future. Maybe you felt it like a rush of heat came over your torso. Also, who did you feel this with? Are there specific people that might have triggered this feeling?

The next step is to dig deep, let's say that perhaps you were with a friend and you felt this feeling come over you, generally, you might have been hiking with this friend in the past but now because you're unable to do that your friend came to visit you at home and you have this feeling of shame coming over now that you know how to identify it how it feels in the body.

What's underneath this feeling? Is it perhaps a fear that you are unworthy of love or acceptance? That people might be turned off by this new you, by your new symptoms? That people might be dismissive of your symptoms? What's underneath it all? What are some of the thoughts, patterns, and emotions that are underneath this feeling? That you feel weak? Take a moment to reflect.

The third step is to actually check these beliefs for accuracy. What's true and what's not? Now, to be perfectly fair, some of these thoughts and feelings you might have are perfectly true and valid. There will be some people in your life that unfortunately will dismiss you, that unfortunately will be annoyed by your symptoms. The choice is now with you. How can you eliminate these interactions or lessen them in your life?

For example, if you have a dismissive doctor can you perhaps visit and see somebody else, same thing with friends. But even if some people are dismissive, check your relationship with yourself. Your illness is just one part of you, it's not all of you. If a friend would be going through what you're going through right now, would you value them any less as a human being because they now had more pain or they were more fatigued, etc?

You can do an exercise of trying to show yourself a similar kind of love that you would to a friend that's going through this. Because no matter what other people might think of your symptoms at that moment, you're never unworthy of love or unworthy of being cared for.

The last, and probably one of the most important steps as well, is to speak out. You might be familiar with Brené Brown, if not Google her she has an amazing Ted Talk and really great books. One of her quotes says:

"If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to wither."

That is so incredibly powerful, you can have a conversation with your loved one, you tell them you know "I'm scared, I'm scared that you think that I'm complaining or do you think that I'm weak or whatever thoughts you're having, however you feel about".

Just have an honest conversation with a loved one. Through doing this and speaking out, shame, like Brené Brown says, begins to wither but it needs to be spoken out.

I hope that this video helped you reflect a little bit on the mechanisms of shame, as well as ways to begin slowly disarming the shame of course it's not an overnight process it's a multi-step approach.

I would love to hear your biggest takeaways from the video down in the comments below. Let me know, what are your thoughts on shame and chronic illness.


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