Ep. 191: Managing a Chronic Illness

This is Your Anxiety Toolkit - Episode 191.

Well, welcome friends. How are you? How are you doing really? I want you to reflect for a second on just that... on just that question. How are you?

I have not prepared for this episode. I just thought I would sit down and take some time to reflect some of, I’m sure, what I reflect on will be the first time I’ve reflected on it and not just that for reflecting with you.

So what I wanted to talk with you guys about is life with a chronic illness or a disability. This is something that has shaken me a lot over the last, I would say two to three months. A lot of you have the background story with me, but if you’re new here, welcome, and I’ll tell you a quick background.

In 2019, I got very sick. Through that process, I also got very... not just medically, but mentally struggled because of the symptoms that were incredibly debilitating. After pretty much every single medical test under the sun, I was diagnosed with a lesion in my brain, that they still don’t know what it is, and a disorder called postural orthostatic tachycardia syndrome.

It sounds scary and it can be scary, but mostly, it’s a disorder to do with your autonomic nervous system and it basically involves lightheadedness and fainting and headaches and overall exhaustion and nausea and very, very big degree of brain fog. It can be mild and it can be very severe and extreme to the point where you can’t stand up.

For months and months and months, particularly throughout COVID, I have been doing my very best to manage this disorder and this syndrome and have been doing really, really well. I’m not going to lie, I thought I’d mastered this disorder. I really did. I think there was a cocky piece of me that was like, “Oh yeah, look at me.” Once again, hard work pays off. And yes, it does. Hard work does pay off.

But recently, I have been hit with another... I call it an event, another wave of POTS – POTS is the acronym for postural orthostatic tachycardia syndrome – and it has knocked me off my feet literally. Not figuratively. I think both.

For those of you who don’t know, I was, two weeks ago, taking a tennis lesson, a part of my attempts to take care of myself as I have cut back immensely with work. I’ve mentioned my kids are gone back to school and my husband’s gone back to work. And so I really decided, I made a conscious decision to put my mental health first.

I had started taking tennis lessons, and in the middle of my tennis lesson, it was very hot. I collapsed and had to go to the hospital. I’m sorry if this is scary for some of you. It had to be monitored and got IV bags and medications and all the things. Again, once again, I really thought this was a short-term thing.

What I am reflecting on today is the realization that I’m not going to manage this. I’m not going to master it. This is something I will probably have to handle for the rest of my life. I was expecting to bounce back and I didn’t. I’ve had many days of not being able to stand. I’m not able to drive. I can drive on certain days, depending on how busy I am, but I have mostly not been able to drive. I am unable to work out.

I wear these most fabulous compression socks right now, the compression socks I’m wearing. I have bright colors in stripes. I have ones with spots and reindeers and all of the things. So, that’s very fun. But no matter how much I hydrate, I’m struggling to eat and so forth.

The reason I wanted to share this isn’t just to... of course, I can share. I want to share with you. But the main reason I wanted to share with you is to talk about what it’s like to wrap your head around long-term suffering. I’m really interested in this because I’ve been really mindful and watching my thoughts about this syndrome. I wonder if this resonates with you guys because a lot of you are dealing with either. A lot of you have reached out and said you have a chronic illness too, or chronic mental illness, anxiety, depression, or any of the disorders.

What has been really interesting for me is to catch the thoughts I have around disability. now, the first thing – and I’m really open about this, and I’m really happy to share how far I have to go – is I didn’t realize I had all this stigma around the word “disability.” I have a career in people with disabilities or struggles or long-term chronic stuff. I wouldn’t judge anybody else, but interestingly, as soon as I had to recognize, I kept saying, “I don’t know why this happened. I don’t know why this happened. Why did this happen? This shouldn’t have happened.” My doctors said, “No, you’re going to have really big ups and really big downs. That’s going to happen. That is a part of this disability.” I really was able to observe how judgmental I was about that in myself.

The word “disability” was not okay with me, the word “long-term chronic illness.” I was like, “Uh-uh, no way, I will solve this,” until I had to be like, “Wait, that’s a lot of energy, negative energy on something that does not serve me and is built around a stigma and a judgment of me having a disability.”

It’s so painful folks to observe that. Thank goodness I have those skills to be able to go, “Okay. That was judgment. Interesting.” I encourage you guys to take that approach when these types of thoughts come in. Because again, I’m always working with my patients and clients and people on social media around the stigma of the word “disorder” or “disability” or “mental health” or “mental illness.” It’s important that we catch those judgments.

Now, once I caught it, to be honest, I didn’t do much with it because I really just had to hold some space there to wrap my head around, “Whoa, okay. This is a long time for me now.” I thought I was the special one who could get through it and it’s not going to bother me again, but it’s not. It’s going to come back. This one has been particularly painful, physically 100%. This was probably my most serious event or wave of POTS. But also, just to be able to really look at how it has impacted me mentally.

Now, here’s the thing. Once I came to the understanding, not just the acceptance yet, but the understanding that this is long-term and something I have that I will have to continue to manage, it was so interesting how my thoughts wanted to go to hopelessness. “Okay, well, now my life’s going to suck,” or “I should give up. This is going to impact my life and terribly impact my life. This is going to ruin my life,” and so forth.

Again, it was being able to observe and catch and watch myself go into hopelessness and be able to... If you could see me, I would smile and go, “Ah, okay, interesting.” That’s the story I’m telling myself because here’s the thing, I’ve had this since 2019. I’ve been managing it this whole time with the thought “I can manage this.” And therefore, I was happy.

Now, nothing has changed. I’m still having POTS. I had another incident. The only thing that changed was now that I had a recognition of this being a problem long-term and I started to think negatively about it. That’s the only thing that changed. I’ve had POTS this whole time. I’ve had good days and bad days this whole time. I happened to have a significantly bad period and I’m still in that. The only thing that’s changed is the story I tell myself, and I have to keep catching the story, catching it, catching it.

Now, I know some of you are saying, “No, but my disability is making my life have a lower quality.” I’m not saying that’s just a story. I understand that it’s a situation and a circumstance. So I’m not discounting that. But what we need to do, and this is why I wanted to reflect with you, is to catch the story we tell ourselves about things that are not true, like the future, because we don’t know. We don’t know the future. There may be a POTS drug that comes out and I take it and I’m happy for the rest of my life.

I am going to recognize that having this disorder has had some benefits. It’s forced me to slow down. It’s forced me to be grateful for my medical health, for my legs and my arms, and for my heart and my brain.

This is where I ponder how wonderful that our body tells us what to eat. How wonderful is that? Because when you have POTS, you have nausea. And when you have nausea, nothing feels good to eat. You have to force yourself to eat. Every meal, I have to force myself to eat. Sometimes, I have to tell you guys, I was cracking up. I eat mostly healthy, meaning I ate all varieties. There is no good or bad food. I have a very good relationship with food. I love food. Food brings me incredible amounts of pleasure. I never judged myself for what I eat.

I was telling my sister, who’s a doctor, she was like, “Well, are you eating?” And I was like, “Yeah, I had chicken nuggets for breakfast.” And she was like, “Why?” And I was like, “It’s literally the only thing I could eat. That’s the only thing I could get down. It’s the only thing that sounded good.” And she was like, “Okay, what did you have for lunch?” And I was like, “I had ribs.” And she said, “Kimberley, what is happening?” And I said, “No, this is how it is. I have to...” It’s so hard. And I’m now so grateful for the pleasure around food that I have experienced and hopefully, we’ll experience it again here very soon.

I really want to watch (1) the story I tell myself and (2) the hope catch the hopelessness in its tracks. I know a lot of my patients and I know a lot of you because you’re going through a particularly difficult season like me. You’re telling yourself this season will never end, and it will. Seasons come and go. Some last for longer than others. Sometimes it’s a particularly chilly season, sometimes it’s not. The main piece here is for me to catch the judgment, the stigma.

Here’s another one guys and I hope this resonates. It’s so humiliating. I collapsed right at the entry of the tennis. People were walking past me, and my instinct was to say sorry to every person that passed by. Even though I was pretty much not in consciousness, I was frequently apologizing to my tennis coach, my husband. My tennis coach called my husband. I frequently apologized to him. I apologized to anybody who saw it. “I’m so sorry. I didn’t mean to scare you.” And how much that apologizing was embedded in shame around suffering.

I’m on the floor, completely limp, but I’m apologizing to other people. That is completely related to the shame I noticed that I am carrying around suffering and struggling and not being super, super-duper high functioning. This is dangerous. We have to check this. I’m going to encourage you to check this because the problem with that is it stigmatizes disability in general and it stigmatizes you being a human who suffers, and you will. You’ll have illnesses or struggles like seasons that are difficult. It’s so important that we break down that judgment we have around suffering and disability, meaning when you don’t have the ability to do things. So important.

When we break that down and we work through that, then when we do struggle, there’s not this second layer or fifth layer of pain. It’s just like, “Oh no, I’m just suffering. I’m suffering right now. This is a difficult season.” Instead of, “This is a difficult season. I’m suffering. It’s never going to go away, and I’m weak and dumb and stupid and inconveniencing other people for suffering.”

So, I really want us, hopefully, to learn from my own experience here. Hopefully, this resonates with you where you can really break down the stories and the beliefs and the judgments we have about disabilities. I think it will make a safer place for those who do have a disability. I think it’ll make a safer place for you when you’re suffering. I think it’ll make a safer place for us as a human race around the idea of suffering. It’s so, so important.

The last piece here is when we’re suffering, I noticed this whole back and forth on the solution. Should I do this? Should I go on this medication, that medication, that treatment, these treatments, see that doctor, see this doctor? I’m sure a lot of my patients are like, “Am I doing the right thing? Have I got the right treatment? Have I got the right therapist? Have I got the right medication? What’s happening?” There’s so much indecision around seasons that are filled with suffering.

I just want to validate that. I don’t want to give you advice. I don’t want to guide you in any different direction. I think all I want you to do is to recognize that indecision and not punish yourself by staying there too long. Consult with your doctors. Consult with your therapist. Talk with respected people or people you trust. Be careful of how much mental space indecision takes when you’re in a difficult season because you’re suffering. It’s enough. We don’t need to add. We don’t want to add. We don’t want to make more problems and more suffering for you because you matter and your recovery matters and your healing matters. That’s just something I’m noticing.

It’s funny, every morning, I am negotiating with myself in terms of like, “Will I take my meds today?” I mean, I always take my meds. So I’m not going to ever discard someone from making a medical decision without seeing your doctor. I always do, but I really catch myself going, “Maybe I won’t take it today. This is just too much. It’s too hard. It’s too many side effects. It’s too difficult, too painful, too scary.” And I have to go, “Okay, Kimberley, get your head out of your indecision. Honor what’s right. If you really need to do that, be effective and call your doctor. Don’t spend time in your head.” So, that’s just where I’m at.

What I will say, just in case any of your worries, I am okay. I have a great team. I have tremendous support. My husband, oh my God, he’s just amazing at showing up when things fall apart. He is incredible. I’m so, so lucky. I hope that I don’t worry you with me sharing this.

Someone asked me the other day on social media, “Is it hard for you as a clinician to share this?” And I said to them, “No, really not.” A part of my mission is to de-stigmatize therapy, to take the stigma out of going to therapy. I think a really big part of how to do that is for the therapist to show up as real humans. I think when we do that, when therapists show up as real humans, in the process, we do this stigmatize mental health and therapy because we don’t see the therapist as this person who holds all the secrets and is the knower of all things and is analyzing you instead of just seeing them as humans. You’re just going to therapy to talk to a human who also suffers. I just wanted to share that with you because I think it’s important that I model that to you. That’s one of the things that I hold very strong in my values.

So that’s that. There are my thoughts on struggling and going through a chronic illness and wrapping my head around the stigma of the word “disability” and the concept of disability. So, that’s it. That’s all I have to say.

I hope this has been helpful. I hope that you feel seen and you feel heard. Maybe you have some insight as I spoke. If that’s the case, we’ll then, I’m a happy girl.

All right. Thank you so much for listening. I do know your time is precious, so I’m so grateful to have this time with you. I will continue this conversation as I continue to unpack my own many layers of stuff, of glug around it. I’m very open to continuing to learn. I’m really, really looking and learning around the stigma of disability because it’s something that I have been privileged up until now, not to have to really wrap my head around. So I’ll do the work. I will stumble bravely through this, as I’m sure you are too.

All right. I love you guys. Please go and leave a review. The reviews help other people see this podcast as something of quality. When they see other people’s reviews, they are more likely to click on it, which means I get to help more people, and that is just a blessing. So, thank you. Please do go leave a review.

Please take care of yourself. Please take some time to hold your heart tenderly and nurture whatever suffering you’re going through because you’re not alone and we’re in this together. Okay. All my love to you.