How I'm Embracing the Label 'Burden' as Someone With a Chronic Illness

Burden.

A heavy word that gets thrown around quite a bit within the mental health, chronically ill and disabled communities. 

It’s about time we break the stigma surrounding “burden” and start learning to accept it and grow with it.

But what is a burden? 

The dictionary describes it as: a load, particularly a heavy one. So when we talk about it in the context of being a burden, we are talking about the emotional and physical tolls that exist and surround us. 

I’ve touched on it before, being a burden is a bad feeling. I moved out of my sister’s house because I recognized everything I needed was too much to ask, and I tried to live on my own and eliminate that burden — except I simply placed it on myself. But, being a burden isn’t a bad thing. How we as a society interact makes it negative.

A burden only exists within a negative context.

False.

There’s two groups of people who need to be addressed: the person who imposes the “burden” and the caregiver/support. 

As a burden myself, I recognize that I can’t exist without my support system and my parents who are my caregivers. The difference we need to distinguish between truly being a burden and simply existing and having needs is that these people within our systems have accepted the additional responsibilities and want to care for us. They want to help and they have signed up for these roles knowing that some days are going to be really hard.

These people who are closest to us aren’t total strangers who we have decided to unload on. They are people who have taken hundreds of extra steps to ensure that we are comfortable and feel valued and that our needs are being met.

Burden should be replaced with responsibility. 

I have placed a large portion of responsibility regarding my care and my health onto those around me only because they have welcomed it. However, in choosing to place this responsibility and accepting help I am in turn placing a burden on those caring people.

In my opinion, it’s foolish to believe that we aren’t, because once we start equating burden to responsibility, there is no denying that people who look after us have in fact taken on our burden. 

We pretend the burden doesn’t exist.

When I say we, I’m speaking from the perspective of the chronically ill person and the caregiver. 

I often see that when people express they feel like a burden, they are met with, “Oh no, you aren’t a burden,” which in my opinion, is false and why the entire stigma exists.

Having been told multiple times myself that I am not a burden has not helped me at all. It has pushed me to refrain from speaking up about areas where I feel like I’m imposing. It has made me unable to feel comfortable expressing how I feel when I have to ask for more than I wish. A barrier between communication suddenly goes up and I no longer feel welcome to speak on the subject to my support system.

I don’t want to make someone feel bad for my needs, and so if I’m told that my needs aren’t more needy than most, I can’t simply talk about my reality. 

If we break down my needs for a moment, it revolves around our senses. I need a space that is quiet, dark and does not have any overpowering scents. I need to be able to work within my own schedule and that means I’m up later at night, sleep in and may need a nap at an odd time. I can’t always get water or food for myself. I regularly struggle to clean and stay organized. This is on a very basic level, but these needs can be broken down to incredibly specific and honestly frustrating. 

For my sister, it took an incredible effort to be conscious of my needs and not push her ideas onto me. She recognized that I didn’t need to be bombarded at home with all the possible ideas that went through her head for ways to relieve my pain. My sister is a person who always has a unique and innovative solution to problems, and dealing with such a complex chronic condition proved to be difficult. One physical aspect of her life she had to change was utilizing the Roku headphones when watching TV. She laughed remembering how many batteries she went through in trying to make a small lifestyle adjustment. 

Specifically for my dad, the biggest obstacle comes from not knowing how to be a caregiver. He’s lived an entire life and this isn’t a role he understands, so in a way he’s on this journey with me, learning my needs and striving to understand my pain and how it impacts me.

For my mom, my needs take more of an emotional toll. On the worst pain days, I find myself in so much pain and can’t express myself. All that comes out is anger and it ends up being directed at her with frustrations and shouting when I’m just attempting to get across a simple sentence. But for her, she knows I’m not angry with her and she knows that it means I am in tremendous pain. To watch your child be in so much pain and know that you can’t do a thing to make the pain go away is emotionally exhausting. 

The largest need I have revolves around food, and we as a family struggle with it. We all have different ideas of what we want to eat and what we can eat and I have very specific needs that are constantly changing. 

But I have the needs regardless, and they are happy to take on the added responsibility so that it doesn’t all fall on myself. This allows me to be on a path to better health. 

However, there’s another side to this picture. If I feel as if I can’t express how I’m feeling because I’ve been told I’m not a burden, that most certainly will go the other way.

How, as someone who cares and has insisted that someone isn’t being burdensome, do you turn around and express where the added responsibilities are taking a toll? 

You’ve cut off your line of communication as well and will need to bring in additional people into this loop of support. The caregiver and support system needs care just like the “burden” and they don’t want to feel as if they’re becoming a burden themselves. 

Caregivers and support systems aren’t 24/7 hotlines.

I touched on this in my last post a bit, and that post truly stemmed from the fact that being an advocate and member of many support systems is incredibly draining.

Playing both roles, especially knowing my capacities are much reduced because of my pain, has really allowed me to understand how bad this stigma of “burden” has gotten.

People burn out. People cannot be available constantly to everyone else and still have energy leftover for themselves. The idea of “self-care” is half laughed at these days, but it is incredibly important in both roles. 

As the burden, I have to step back and recognize when I have no choice but to put my needs first — in turn this actually creates most of the things that are considered burdensome.

But as support, if I spend every waking moment constantly on call for those who need a shoulder to cry on, a safe place to vent, advice or simple human interaction and encouragement, my waking moments are gone. I haven’t left any for me and many caregivers can echo this sentiment. In situations where a spouse is the caregiver, so much added strain exists because you stop being the spouse and are solely the caregiver. I read recently how important it is for people in those situations to make an effort to schedule dates and regular couple activities. 

The reality is we can’t expect anyone to be available to be supportive or attentive at a moment’s notice. 

This is why it’s important to have more than one source of encouragement, support and care. And even if you don’t have people in your life who you’re comfortable with or who respect what you have to say, there are places you can get this for free. Join The Mighty and utilize the Thoughts and Questions feature — here you can openly share and don’t even have to attach yourself to the sharing. There is support available constantly as the site has members from around the globe.

It can become more burdensome when there isn’t consent.

For the most part, our support system consists of people who have agreed to be there for us and to help us. For many of us, we also have a support system that exists online — on Twitter, in various Facebook groups, on Instagram and so on. The concept of consent here gets a little blurry.

Regardless of being online or reaching out to a friend in real life, we must always strive to ask permission. 

Get in the habit of prefacing your needs when you start a conversation. If you openly say you need a place to vent, you need advice or you just need someone to talk to and express how you’re feeling, you have opened up the opportunity for your support to say no. We have no way of knowing what other people are going through or what capacity they are functioning at, so simply asking makes them feel valued.

This goes a little further on general social media. There exists a “trigger warning” that may hide content, or just allow people to know what is being discussed. On Twitter, people will start tweets with [TW: eating disorder] or [TW: suicide] and this opens up the concept of consent to all viewers. These trigger warnings must exist, especially in the mental health realm. 

I’m guilty of being an individual who will stay up all night with someone because they tweeted something that lacked a TW and I felt obligated to make sure they were OK. I don’t want a pat on the back, but when the same people regularly seeking help online, it does impact every person who follows them.

It doesn’t matter if I’m not in a good place to help or am doing my best to just help myself, that lingering guilt keeps me up at night.

If you need immediate help, reach out to the Suicide Hotline: 1-800-273-8255

Otherwise, you must be mindful of the people who support you. Reach out to them privately and keep reaching out until you find someone who can help.

Being a burden is not negative. Burden is a responsibility and we need to focus on fostering conversations on how all parties can improve. 

We need to accept people aren’t obligated to be available to us at all times. We don’t own anyone’s time but our own. But, for the wonderful people who are in our support system, I believe being a “burden” can come with the territory and we need to embrace it. We also must strive to understand exactly how we come across to people, because it doesn’t matter if we’re sick or disabled, we can still be negative and even toxic to others. We don’t get a pass.

And as caregivers we need to learn to converse, even when it’s hard. We can’t yell or diminish others because of our frustrations. We have to convey our needs politely.

Communicate. Be mindful. Encourage others. Ask permission. Help remove the negative weight from burden.