Does my chronic illness make a me a burden in my relationship?
In a recent New York Times advice article, a reader sent in the question, “Is it okay to dump him because he has a medical condition?” And the answer given was that yes, this is okay. In fact, they said, if you are not ready to take on the burden of a chronically ill partner then you don’t have to. And the use of the word ‘burden’ feeds straight into a struggle that most chronically ill people have, or have had: that they will be seen as a burden; that they are not worthy of love and loving relationships, because they are too much and too difficult. Now don’t get me wrong, it’s fine to end a relationship if you do not like or get on with the person, but to end it because you feel that the chronically ill person is a burden, completely devalues people with chronic illnesses.
We already feel like we are a burden
Why do we already feel like we are a burden? Keeping this short, chronically ill and disabled people are consistently excluded from so many things. Take very simple things like accessibility: access to events, groups, buildings, is still very limited. If you don’t believe me, try pushing a wheelchair around a city. And this is a very obvious accessibility need – there are many others, that are far less so. Surely, rather than expecting gratitude when something is accessible, such accessibility should be the norm – a right, not a privilege.
Chronically ill people often cannot work – finding themselves excluded from employment for many reasons. Working from home, previously considered unviable when requested by disabled workers, has become a more widespread option, since coronavirus – but whether it remains a possibility, post corona, remains to be seen. The inability to work means that the chronically ill are excluded from financial independence, such that we often depend, financially, on friends, family and the state.
We are even excluded, it would seem, from the lifting of the corona virus measures! In a world where we are such an afterthought, it is no wonder that people consider it difficult to share their lives with us. And then we are made to feel as if we are the problem and ‘a burden’ – because, in a world which is built on our exclusion, we want to be included.
The portrayal of chronically ill people as burdensome on their partners and on their families is certainly not a new one. In fact, when talking about past relationships, many chronically ill people report having had their partner break up with them because it was felt they were a burden – a very negative reinforcement of this message.
Equally, many chronically ill people who are in relationships have been told how lucky they are to have found someone who can look past their chronic illness, whilst the able-bodied partner often reports that they have been called heroic because they are in a relationship with a disabled person. We have all seen those inspirational videos of the American high school footballer who takes the disabled girl to prom and is praised to the skies for it – as if she somehow is not deserving of a cool guy to take her to the prom.
The specific use of the word ‘burden’, it seems, is reserved only for certain groups of people. I have seen many unhealthy relationships were one person has carried a lot of responsibility for the other, either financially, emotionally or physically, and this was not reciprocated – but I have never heard either partner termed a burden. Yet if one of these people had been chronically ill or disabled, they would almost certainly have been so.
We have normalised the idea to such an extent, that it is not even questioned. Yet children are not deemed by society to be a burden to their parents – rather a gift. Even my cat is not considered a burden, yet I have to change her litter tray, feed her, play with her, cuddle her, and pay for everything she needs, every day. Apparently, in almost any relationship but one with a chronically ill or disabled person, the reciprocity in the relationship is there for all to see.
What is the impact?
The message that we are a burden is loud and clear, not just in this New York Times article, but everywhere, and it has an impact on people with chronic illnesses. I have had many conversations within the chronic illness community, with people who feel they are not worthy of going out on dates, because no one would be interested in them. Feeling like a burden is something we all feel, not just in the context of relationships, but in a thousand other ways.
I constantly have to fight the idea in my head that I am a burden because I am chronically ill. I know I am not. But despite the fact that I have been exceptionally lucky and have not lost any friends from becoming chronically ill, I still feel that my partner deserves a healthy person, that I am a drain on him, and that I would not be able to find anyone else to put up with me if he decided not to. I also have to fight not to feel this way about my family, and my friends.
And unsurprisingly, all this is really bad for your self-esteem and mental wellbeing. It is hard to feel good about yourself, to feel proud of your achievements and to feel deserving of respect, when all around you and labelling you a burden. I feel this almost goes without saying! So, when a platform with as much influence as the New York Times reaffirms this negative labelling, it causes a huge amount of pain to the many chronically ill people who are struggling not to feel this way already.
Even worse, this sort of narrative is a reason why many chronically ill or disabled people feel they have to stay in unhealthy or abusive relationships. A well-known method used by abusers is to attack their victim’s self-esteem, to make them think that no one else will ever love them. Publicising the idea that chronically ill people are a burden in a relationship does half the job before the abusive partner even starts. If I, in my healthy relationship, sometimes think about how lucky I am to have found someone who accepts that I am sick, then it is easy to see how this keeps people in abusive relationships. If your starting assumption, as a sick person, is that you are a burden, and there is no way anyone else will love you, you are more likely to stay in a relationship than take the risk of being forever single.
Let’s be realistic
Realistically, I can’t say that my chronic illness has no impact on our relationship. I am often bed bound or housebound, and too tired to do things that are normal within a relationship – things that we used to enjoy doing before I became sick. When I am not well enough, my partner has to cook for me; he does all my heavy lifting, and cares for me in so many ways. I have an energy-related illness so, in all honesty, we can’t have sex as often as most other couples, and when we do, I am bed bound for a few days afterwards. Financially, I struggle far more than if I was healthy, because I am unable to work and am also (as a result of living abroad) unable to access benefits. In so many ways, my chronic illness has shaped our relationship, making it very different from that of our able-bodied friends, and presenting challenges that they simply do not encounter.
But using the word ‘burden’ to describe this, implies that all the care and the benefits in our relationship are one way – as if he runs round after me, but gets nothing in return… which simply isn’t true. We are in a relationship, so by its very nature it is two sided. We are emotionally interdependent and share the benefits of our relationship fully. It is not a one-way transaction.
Nor should any relationship ever be measured transactionally. It would be very weird to start keeping tally of when I help him or when he helps me, because that is not what our relationship is built upon. I don’t comfort him when he is sad, then in return he cooks me dinner! We don’t keep a score. Our relationship is built on mutual love and care, one for the other, whichever way that comes around – and we both benefit from that and enjoy it. Otherwise we wouldn’t stick around!
To call me a burden because I am chronically ill, simply does not make sense in the context of a loving relationship. Sure, we can discuss the realities of dating a chronically ill person. They are real, they exist, and there are ways of dealing with them. But do not suggest that these make the relationship into a one-way dependency, because it is not true, and it is harmful.
‘Just because you carry a burden doesn’t mean you are one’
I have seen this quote floating around in response to the New York Times article, and feel it is a good place to end my post. Carrying the burden of being chronically ill does not make you any less of a person. You are not any less lovable, nor any less worthy of love – and you may even have gained things from your illness that have grown you as person – such as empathy, patience and appreciation. If someone is treating you as if you are a burden, it is not your fault and you do not deserve it. In truth, it probably says more about them than it does about you.
Plenty of people fall in love with chronically ill and disabled people all the time. In fact, I started a new relationship whilst chronically ill, and my illness did not make my new partner love me any less. He didn’t consider me a burden in our relationship. We just ended up having slightly less conventional dates and communicating a little more openly than people might otherwise do. All of which I find to be very positive things.
So, don’t let this idea, and negative articles like this, prevent you from dating, falling in love and having balanced and loving relationships. Just like everything else you share with one another, you can carry your illness together.
Links
- This is a response to the article and gives a very clear image of why chronically ill people feel like a burden.
- A response post to the article by someone with brittle bones.
- I was going to link to the New York Times article but decided I didn’t want to support them. They have a history of publishing this sort of story.
