Why talking about chronic/invisible/ incurable illness can be difficult and challenging at best of times?

Talking about chronic and/or invisible illnesses can be a real challenge

To say that talking about chronic illnesses is a challenge is probably an understatement. At times, I find the whole process of talking about it rather nerve-wracking for a variety of reasons. Both as a person who suffers from a chronic illness and a person who knows a lot of people who suffer from chronic illnesses I find this theme very difficult at times and really challenging at the best of time. This text will be written mostly from a perspective of someone living with a chronic illness, but it will by no means be a representative for everyone. I’m still trying to figure out things myself.

Talking about chronic and/ or invisible illness can be really hard. I’ve agonized over this theme a lot. Believe it or not, mostly it is not about how it will make me feel. I think that I often end up avoiding this subject not so much for myself, but because I worry how it will make others feel.  If you really think about it, the whole subject of chronic (incurable) illness can be quite frightening. It can create a constant dilemma (to talk about it or not?) in a life of person suffering from chronic illness. At times I even felt that talking about it does no good and tends to just generates stress. Certainly, conversations about chronic illnesses sometimes turn unpleasant for everyone involved. On the other hand, I do recognize that sometimes people genuinely want to know more. What is more, sometimes (for practical and/ or emotional reasons) you really do need to explain your conditions.

 Chronic illness are often rightfully called invisible illness. This mysterious element can make them seem even more terrifying. Those of us who suffer from them are obviously forced to deal with chronic illnesses, but (trust me on this) we often wish we didn’t have to.  We might even find it hard to write or think about it.  Sometimes we need to invest a considerable effort into being completely honest with ourselves about our disease.  So, if an inner monologue about chronic illness can be stressful, how much more a dialogue? I can’t speak for others, but I can explain why it is sometimes difficult for me to talk about it in more detail. Hopefully, this will help someone else struggling with the same issues. So, why is it hard for me to talk about my chronic illness?

WHY IS IT HARD TO TALK ABOUT ONE’S CHRONIC ILLNESS EVEN WITH PEOPLE WHO WANT TO KNOW MORE?

1.       I DON’T WANT TO FRIGHTEN PEOPLE OR MAKE THEM FEEL UNCOMFORTABLE.

Firstly, I don’t want to frighten people or make them feel uncomfortable. The thing with chronic illnesses is that they are not only hard to experience but to observe as well. This is especially the case when a loved one is involved. Nobody (nobody normal that is) wants to see another human being suffering. Everyone wants to see the person who is hurting/suffering get well. It is hard to accept that sometimes there is nothing that can be done to ease the pain. It is even harder accepting that there is no cure. Interesting, sometimes it is particularly difficult to talk about your chronic illness with people you care about or like, because you care about them and the last thing you want to do is scare them or cause them discomfort. The mere idea that a seemingly healthy young woman or man might be in so much pain he or she often can’t function or live normally is very frightening. The negative impacts of chronic illnesses are very real. In addition, often there is very little that can be done to physically help those suffering from chronic illnesses. So, the reason why I sometimes don’t want to talk about it is because I’ve noticed that just knowing about the existence of chronic illnesses can cause some people serious discomfort. The truth is that a chronic illness can happen to anyone.  Some people just can’t deal with it.  Moreover, it is kind of hard to talk about your chronic illness without it sounding like a horror story. You might joke about it, but if you want to remain truthful, you’ll probably need to resort to dark humour.

2.       I DON’T WANT TO STRESS OR DEPRESS PEOPLE.

Secondly, I don’t want to stress or depress people by talking about my chronic illness. The reality is that the symptoms and the pain levels can be quite extreme. Hearing about it in detail can be quite shocking. Consequently, it can catch even the most compassionate listeners by surprise. Sometimes even the most caring people will not know how to react or will react in a way they (or even you) will regret later. On top of that, those of us suffering from an immune/chronic illness are often aware that we might (without knowing it) be talking to somebody who was recently diagnosed with an immune or a chronic illness (or perhaps a member of their family or friend was recently diagnosed) and we don’t want to scare them and cause them additional stress because we know that initial shock is hard enough. The truth is that every case is different. The bottom line is- a diagnosis is not an impending death sentence. We don’t know what causes immune illnesses, we don’t have a cure, but sometimes miracles do happen. Besides, some people don’t have it as bad as others. Just because medications didn’t help me or I had an allergic reaction to them, doesn’t mean you will too.  Not every case of chronic illness will result in regular hospitalisations, operations and other extreme measures. When people ask me about the medications, procedures and cures I’ve had, I always try to answer as truthfully and as close to the fact as possible- but at the same time I’m worried I might scare them or freak them out. In reality, I don’t really blame people for being freaked out or scared. Even after all this time, at times I still feel afraid. That doesn’t mean I haven’t accepted my illness. It simply means that I never know what my next day will be like- how much worse will my illness get. Chronic illnesses are frightening- and perhaps talking about them is bound to be freighting and scary.

3.       I DON’T WANT TO SOUND TOO NEGATIVE OR CAUSE SOMEONE TO FEEL DOWN.

Thirdly, I’m afraid of sounding too negative. I think most of us chronic patients are afraid of that. We know that life is difficult for everyone.  After all, we know that pain is relative. We know you have your own problems. We don’t want to make it all about us, we don’t want to make it look like we thrive on negative attention. Nobody sane wants that kind of negative attention. We don’t want to whine and we certainly don’t want to make others feel bad. Often when people hear you’re ill, they want to feel bad for you (or even worse to feel sorry for you)-and it is hard to explain to them why they shouldn’t without downplaying your illness or pretending you’re better off than you really are.  Often I end up pretending that I’m fine when I’m not, just because I haven’t figured out a way to be truthful about my condition without freaking everyone out. Personally, the last thing I want is to make somebody feel down because I have health issues. For those of us with chronic illnesses, this desire NOT to hurt others can lead us to overburden ourselves. If you’re not careful, it can even turn into a vicious circle where you’re constantly lying and pretending that you’re feeling better than you are, in order not to hurt those close to you, but sooner or later the truth comes out and it creates an unhealthy environment. Before you know it, your loved ones have lost their trust in you, they start to suspect you, and they wonder whether you’ll always hide your health problems from them. In the end, nobody is happy. Alternatively, you can get so used to your illness that you stop paying that much attention to the symptoms. It is not that you’re pretending that you’re fine, you can actually feel relatively well even when medically speaking you’re not doing so well. In those cases, you might feel like talking about your illness will bring both you and others down. Sometimes one just doesn’t want to talk about it. Sometimes we feel that the disease has already robbed so much of us that it deserves a cold shoulder.

4.       I DON’T KNOW HOW TO EXPLAIN THAT I CAN BE RELATIVELY WELL, BUT STILL NOT WELL ENOUGH TO SPEND TIME TOGETHER WITH SOMEBODY.

When a person who suffers from chronic illness says she/he feels fine, it might mean ‘as fine as I can possibly be all things considering.’ Besides, often we don’t want to talk about every horrible detail of our illness. We feel like the illness has already cost us enough time and money- basically we want to talk about something else. We get tired of ‘negativity that comes with the territory’ as well. This doesn’t mean we don’t trust you enough to share those things with you. We might just feel you have enough on your plate or that we both could benefit from talking about something else. Moreover, we might be ‘relatively fine’ but still not be able to spend time with others the way we used to. The problem is when people automatically assume that you’re not there because you’re avoiding them for some reason or that you don’t care about them anymore. ‘If you say you are fine, why didn’t you come to my birthday/ wedding/ etc.?’ some might say or think. Well, sometimes it is just not so simple. This Summer I attended every wedding I was invited to. In retrospect, perhaps that was not such a good idea but I’m bringing it out because I want to point out that chronic patients generally do want to socialize. We might not talk about our problems because we don’t want to sound negative or attract attention, but if we are there for you on your special day, it doesn’t mean we’re doing all that well- we might have taken a pain killer to be there.  We might have danced the night away despite having a high fever. Similarly, if we are not there for you, it doesn’t mean we don’t care about you- sometimes we just can’t make it. I know it might seem weird-turning up when nobody expects us and not being there when expected, but imagine how we feel. We literally can’t plan anything. We understand that it is difficult for everyone, but it is scary for us as well. Some things never get easier.

5.       I DON’T HAVE ALL THE ANSWERS

People tend to assume that if you’re accepted your illness, you must have all the answers. That is not always so. At the moment, I feel like I’m in a good place mentally, but that doesn’t mean I have found the perfect answers. I’m sorry but I don’t have the perfect solution for everyone. I don’t have it for myself either for that matter. Sometimes I feel very calm even when I’m struggling health wise and other times I do break down a little.  In a way, chronically ill people are a lot like regular people. We have our ups and downs. Our medical condition is not necessarily connected with our ‘mood’. While depression and suicide is more common among chronic patients (and for good reason), not all of us struggle mentally. Some of us struggle physically and emotionally, but not mentally.  Perhaps it is good to note that individuals who truly suffer from depression often try to hide it. Depression is a serious illness and I’m not really qualified to give advice on how to talk with a person who might suffer from depression, but one could argue that being emphatic and considerate is always a good idea. When it comes to sensitive topics, being polite and kind is especially important. At any rate, just because someone is sick doesn’t mean he is instantly an expert on the subject. We might not be able to produce the answers you’re looking for. While it is true that difficulties and hardships can build a person’s characters, don’t assume we feel like the wisest person in the world just because our life is pretty traumatic. I don’t feel particularly wise myself. Has my illness taught me a thing or two? Probably it has, but I like to believe that the lessons I’ve learned are not due to the extreme pain I sometimes have to live with. Some people don’t want to hear that it can be ok not to be ok, they want to see a cure. Paradoxically, often the ones suffering from chronic illness deal with it better than those that aren’t. I suppose that it is because those that suffer have no other choice but to suffer it. To conclude my point, most of us don’t feel that we’re particularly inspiring or wise because we have to deal with health-problems on regular basis. Not that there is anything wrong with using one’s illness for good, to inspire and educate people. It is just that sometimes one does feel the pressure to be a success story. That kind of pressure is hard to live up to. In the end, we are all human. We all struggle.

Chronic illness discussion

I hope that my post today has been at least a bit informative. As I said, it is written mostly from a personal perspective (personal experience), but I tried to cover at least some of the reasons why talking about a chronic illness might be difficult and challenging. I would like to stress that the reason why people might avoid talking about their health condition even with people they love (their close ones) is not because they don’t trust them, but because they don’t want to burden them.

Obviously, talking with strangers, potential or current employers can be challenging for a whole new variety of reasons. Trying to get employed while you have a chronic illness can be especially challenging. Most countries don’t have disabled fees for people suffering from chronic illness so have that in mind. Some people hide their health condition just because it is the only way they can get a job. There are a lot of factors to consider when it comes to conversations of this kind.

If you suffer from a chronic/immune/incurable illness or know someone who does, feel free to contribute to this discussion. What are the things you are struggling with? Do you find talking about chronic/ invisible/ immune diseases difficult and hard? Do you have any tips to share?



P.S I have used my own art to go along with this article, the medium of this painting is watercolour on paper. Thank you for reading!