Blog, Lifestyle, Living With Chronic Illness

Why Speaking Up For Yourself With Chronic Illness Matters

speaking up for yourself with chronic illness

In my life with chronic illness, there are things I struggle with besides the physical symptoms. One of those things is speaking up for myself. The hardest part of all? Speaking up when I need help. Or admitting that I’m unable to do something because of my conditions, which then makes me feel either like a burden or an outsider or, on a really bad day, both. 

Can you relate?

Along with learning about my conditions, my body, and how to manage my symptoms, I’ve had to learn how to live with chronic illness. This includes learning how to speak up for myself and being OK with needing to do that. 

It’s not always comfortable. And I still find myself resistant to saying what I need sometimes. It can be embarrassing, depending on what I need.

Growing up as an introvert, I often had trouble speaking up for myself, especially in front of groups of people. But not only is this a necessary skill for all human beings but it’s also vital to the well-being of those who are chronically ill. 

It’s not an easy skill to cultivate. If you live with a chronic illness, you may already be familiar with feelings of being a burden (you’re not!) or an outsider (not one of those either!). Or you may know the frustration all too well that comes with realizing that sometimes you need help. Sometimes, you need to make a tough decision to prioritize your own health and needs. And finding the courage to speak up to ask for or say what you need may make you feel like you’re bringing attention to your conditions — and your insecurities about how others view you. 

While it may be true that speaking up for your needs spotlights the fact that you have a chronic illness, it shouldn’t stop you from speaking up anyway.


For many reasons, one being that you shouldn’t feel as if you need to hide who you are from the people you choose to surround yourself with. But there’s another important reason here, and it’s this:

Because giving into your insecurities and fears of how others view you at the cost of your health and well-being doesn’t serve you one bit. Not speaking up for yourself when you need something can lead to many areas of your health taking a hit — whether that’s your physical, mental, emotional, or even financial health.

I’ll give you an example.

When I used to live in New York City, friends and family would come to visit Mike and me nearly every weekend in the warm summer months. And when you live in New York City, there’s really one major thing you’re doing a lot besides eating and that’s walking. But as I’ve mentioned on this blog many times before, the heat plus long periods on my feet equals a rough time for this POTSie. 

So you can imagine how weekend after weekend of this would take its toll on my body. My feet and body ached so badly, making everyday walking more painful and uncomfortable. My heart rate would stay elevated for the rest of the night after being out all day, which made me feel totally wiped and exhausted — like I was still running on a treadmill despite sitting on the couch. And I’d feel more fatigued than usual for days afterward.

Mid-way through the last full summer we were in the city, I reached my breaking point with this and said, enough’s enough

I got so sick of the consequences of not speaking up for myself and my chronic illnesses. Because not speaking up meant that I suffered. Not speaking up meant that I set myself up for a flare. Not speaking up meant that I’d face setbacks with my health. 

So I knew I needed to start being smarter about speaking up about what I needed to avoid those weekly flare-ups. And when I stopped to reflect on this, the solution became pretty obvious to me: I needed to know when I reached my limit on our weekend adventures and speak up to let others know when I needed a break. And this break would involve separating from our group to go back to my apartment to get out of the heat, drink some Liquid IV, and rest up for later. 

At first, I felt guilty about leaving our friends behind to go home when they came in to visit us and spend time with us. But I tried to reframe my thoughts because I knew that taking care of myself should be a priority.

So, I framed it this way to people:

“Hey, all, this has been so much fun, but I need a break from the heat and to get off my feet for a bit. After I rest up, I’ll be in better shape to go out for dinner later tonight.”

The first time I spoke up and said something similar to this to some of our friends visiting, they surprised me with their answer. In a good way! They actually said they wouldn’t be too far behind me because they needed a break, too. So I guess in that situation I did everyone a favor by speaking up! 

And because I went home midday to rest, I had the energy and felt well enough to go out to dinner with everyone later. Plus, I didn’t experience any of the negative physical symptoms I used to feel from staying out all day and sticking it out. 

And since I still felt OK and avoided a POTS symptom flare-up, I felt much better mentally and emotionally, too. I tend to be really hard on myself and engage in negative self-talk when I overdo it despite knowing better. It leads me to spiral down into a dark, self-pitying pit of despair, and that’s one place I try to stay out of at all costs. 

Finally, there’s the financial aspect. Remember I brought that up? Because I started speaking up for myself when I reached my limits, I avoided potential medical costs. Like needing to go back to PT for my feet. Or needing to go back to my doctor to address symptom management. 

So, speaking up for yourself when chronically ill is such an important practice to apply to your life. And besides speaking up when you need something, it can also be really hard to specifically ask for help from someone else. I always think to myself, oh, I don’t want to bother them or oh, I don’t want them to think I’m needy or annoying. Sometimes, I just even want to be able to do everything for myself. But that’s not always how this chronic illness life works out. Sometimes, you just need help, and you have to remind yourself that it’s perfectly okay to ask for it. 

For example, let’s say your partner drove you somewhere to meet up with friends. You may stay quiet when you know you need to go home because you don’t want to inconvenience your partner to drive you home. But I’ll encourage you to speak up and ask for help! See if they can drop you at home and then go back out. Or, maybe you know someone else who lives nearby that you can call and ask to come to get you. 

There are solutions out there — you just have to get comfortable with asking for help and verbalizing what you need. And then let people help you! It doesn’t make you any less awesome of a person to need help — everyone needs it now and then. That’s part of being human. 

And just know that if it’s hard for you to speak up for yourself and your chronic illness needs, you’re not alone. 

Speaking up for yourself and your chronic illness needs

Does anyone else have encouraging stories about speaking up for yourself and your chronic illness? Feel free to share them in the comments below! 

Looking for something to read next? How about my tips for surviving the heat with POTS or some of my common POTS triggers? Or maybe you’d like to read about my suggestions for getting through bad days with chronic illness.

Until next time!



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