I am not a burden. I have a burden. And there’s a difference.
I recently shared a post on my Instagram, discussing a New York times article called “Is it okay to dump him because of his medical condition?”.
My message in this post was clear: I am not a burden.
So many people thanked me for this post, saying that they needed to hear this and be reminded that they are not a burden.
It shocked me that so many people could relate to this, that almost all have us have felt guilty because of our illness before and have felt like a burden to someone.
But why is this such a common thing that so many disabled people struggle with?
And most importantly: what can we do if we ever feel this way?
We live in a society that’s very much shaped by capitalism and all the pressure that comes with it. We learn from a very young age to build our self-worth on our achievements, and not on who we are as a person. The focus is not so much on who you are, but more on what you do. What is it, that you can give for this society, what are the things that you can do that can be monetized? People who work in arts or in social work, who do so many valuable things for our society, are often looked down upon because they often can’t earn a lot with what they are doing, but bank managers, CEOs or stock brokers are looked up to because of all the money they make and the hard work they do (even though art is hard work too, but the narrative around it is often very different. Artists are often only seen as "successful" when they manage to become rich).
Nobody seems to focus on whether they are good people, have good values or if they are happy.
When it comes to disability, the stories mostly focus on either the success stories, or the sob stories. There’s hardly an in between. The disabled person is either a hero because of what they managed to overcome, or they are a poor person in need of our sympathy.
“Thank god we’re not them- look, it could be worse!” or
“Look at this person and what they could achieve despite of their disability! What’s your excuse?” “Look at what this person has overcome! If they can do it, you can do it too.”
People with disabilities are only portrayed as positive, when they have a story to tell about how they managed to overcome their illness and can serve as "inspiration porn". And there’s nothing against them, kudos to them for achieving what they did and they deserve all the respect in the world.
But you are worthy as a disabled person even if you haven’t managed to "overcome" it. You are worthy, even if you’re struggling.
What the media often fails to portray are all those strong people who are struggling every day, but are still giving their best to be a good person. Those who are in pain every day, need lots of rest to get through the but still manage not to give up. Those who struggle but still have something to give to this world. Both of those things can coexist.
You don’t have to “overcome” your illness in order to be worthy.
But this narrative of either being a burden and in need of sympathy, or a hero when you manage to overcome your illness, is engrained so deeply in our brains, most people who are disabled or chronically ill struggle with the thought of being a burden on a regular basis.
So, when we become ill, there’s not only the struggle with our symptoms and all the physical pain, there are also the feelings of guilt and the emotional stress.
So, what does all of this have to do with relationships?
Ableist thoughts are often internalized so deeply, that we somehow believe that we have to be healthy, fit and resilient in order to be deserving of love. Even though everybody knows the line “in sickness and in health”, we expect of ourselves to be the one who is there for the other person in case they get sick. We want to be the reliable one, the giving one. We learn that it’s ok to give, but we never quite learn that it’s also ok to take.
Almost everyone has an issue when it comes to asking for help and admitting that there are things that you can’t do on your own. We are trained to become very independent, be able to do everything on our own, never show our weaknesses, never be a burden to anyone.
I struggled a lot with this when I became ill, but then I always ask myself this question: Would I do this for someone I love? Would I do this for my friend? The answer is yes.
Would I mind if they asked me for help? Of course, I wouldn’t. Because I love them and that's what we do for our loved ones.
We are trained to think that an ideal partner is always strong, always there for you, never asking for too much, is never a burden.
But if someone truly loves you, they will not ever give you the feeling that you are a burden.
If they truly love you, they will see you for who you are. And not for what they can get out of the relationship.
Of course, conflicts happen in every realtionship, but a good partner will tell you their issues with love and respect, and not make you feel guilty for something you have no control over.
I know of many cases where relationships ended because one partner suddenly became ill and the other person couldn’t deal with it. And as much as it may hurt in the beginning to realize, that the person you thought loved you, turned their back on you, it’s better to not have someone in your life who makes you feel like a burden. Like you are too much. Like you are only worthy of their love if you have something to give. You don’t need this kind of negative energy and pressure in your life, especially not from a partner.
And let me tell you: even when you are struggling, you still have something to give.
Maybe you’re not the best hiking buddy anymore, but you may still have an awesome personality, great humor, etc. Whatever it is that makes you you: that is still there and that’s awesome.
And here’s another secret: everybody has things they struggle with. Everybody can be a “burden” to someone at some point in their life. Maybe it’s a psychological issue that they’re dealing with, or maybe it’s an issue with anger or loss- whatever it may be, everybody struggles at some point in their life and in need of help. But that doesn't mean that as soon as you are struggling, you are no longer worthy of love. It's not either, or.
In your case, it may be a struggle with physical illness. But that doesn't take away all the positive things you have to give.
So what can we do if we feel like a burden?
Ask yourself this question: Would i do this for my loved ones? The answer will most likely be yes.
And if you're struggling with the thought of being a bad partner because of your illness, remind yourself that there's more to you than your illness. And someone who cares about you will always see and appreciate the good things that they love about you.
We have all internalized ableism. We need to continuously fight against those thoughts that can really get us down and remind ourselves: our illness does NOT make us worthless.
And also, have you ever thought about the fact that your chronic illness might have taught you a lot of things that could actually be very positive in a relationship?
Here are some reasons why people with chronic illness may be very good partners:
we often learn to be very empathetic and good listeners
our illnesses may have taught us to be very independent and to stand up for ourselves
we may have learned how to cope with very difficult situations in life
our struggles may have given us a lot of emotional maturity
many of us really learned to appreciate the positive things in life- and really show that!
Surely not all of these things may account for every spoonie and I'm not a fan of generalizations, so of course we can't forget that every disabled person is very individual and everyone's got a different story to tell. But maybe these are some positive sides about you that you haven't even considered before are very valuable in a relationship!
So if you ever struggle with the thought of being a burden again: here's my number one tip:
Don't focus on what you can't give. Focus on what you CAN give!
And you will see, you will find so many positive things about yourself that are absolutely lovable.
Don't ever let anyone take away your worth.
With love, Rea
UPDATE: I've been nominated for a WEGO-Health Award!
Please click the Link to my WEGO Health profile and click "endorse" if you like my advocacy! Thank you very much!