In this blog post I will be talking about what not to say to someone who has a chronic illness. Living with multiple chronic illnesses myself I know what it’s like to be told things like ‘but you don’t look sick’ or ‘just be positive’. Even though you may mean well and are trying to help it can still upset and frustrate us when we get told these things.
‘But you don’t look sick’ – This is a phrase that us with chronic illnesses hear a lot, even though we don’t look sick it doesn’t mean we’re not sick! Even though for some of us with chronic illnesses we may look fine from the outside but underneath our body is failing on us. We may be exhausted and fatigued, have sickness, dizziness, loss of temperature control, vision difficulties, muscle weakness and joint pain. I could sit here and write pages of symptoms for different illness but I’m just trying to prove the point that I you don’t have to look sick to be sick. I myself am diagnosed with an invisible illness called Fibromyalgia which causes hundreds of symptoms throughout my body every second of everyday yet I may look perfectly well from the outside. Just because us with invisible illnesses don’t look sick some of the time it doesn’t mean we aren’t sick! The previous blog post I have written was all about this phrase ‘But you cant look sick‘ so you can check that out if you want a more detailed explanation.
‘You need to get some exercise’ – This is a phrase that many with chronic illnesses hear a lot and is so frustrating and upsetting to hear. Being told to just go and exercise and be active can be something that is impossible for a lot of us with chronic illnesses.
I have M.E and fibromyalgia and I know that even a small bit of exercise can leave me stuck in bed for days after and completely drained from all energy. Having exercise is yes very important for many people but it’s virtually impossible for us who are so ill. It’s not that we choose not to be active or exercise, it’s merely because our bodies are too weak and will get worse with activity and any type of exercise. Before you say ‘just get some exercise’ to someone you know has got a chronic illness please make sure you know about the condition, read up on it and then you may think before you say it again. When we are chronically ill, small things like getting dressed, showering/ bathing, going to the bathroom, being in company are huge things for us and use so much energy. It may seem to you like we don’t exercise or do many activities that you do but we are doing the best we can.
‘It must be nice to stay home all day and not go to work college’ – I have been told that it must be nice to stay at home all day a few times since I’ve been poorly and I don’t think people realise what it’s really like to do that. It’s not just staying at home all day, watching tv, playing games, having friends over. It’s waking up feeling just as exhausted as you were the night before, feeling sick and nauseous most of the day along with dizziness, muscle and joint pain, and so tired that you have to sleep most of the day. It’s hospital admissions and doctors appointments. It’s not quite what everybody else thinks when they know I stay home all day. I would rather work full time or be in college and have a normal life with no sickness and pain than staying home and in bed all day. For people with chronic illnesses who are bed/ housebound like me, I know would do anything to live a normal and healthy life again. Before you say ‘ it must be nice to stay at home all day’, just think about what you’re saying and who you’re saying it to.
‘Just push through it’ – When living with a chronic illness 24/7, being told to just push through it sounds so much easier than it actually is. For us with chronic illnesses, trying to push through it can make us more ill because our body isn’t physically strong enough to keep fighting it, doing it can sometimes leave us more ill and leave us stuck in bed for days, weeks and sometimes months. From personal experience, trying to push through things with M.E can make me feel really ill and it makes it very difficult to push through it at all because my body can’t cope. Fighting it will just make me more ill and will leave me in bed for days after. I’ve learn’t not to push through things but to do tasks in tiny chunks while also taking rest breaks in between to make the task more manageable.
‘It’s all in your head’ – Having a chronic illness is bad enough, without being told that your illness is all in your head. This can be very upsetting to be told that effectively your illness doesn’t exist and in fact we aren’t even ill at all. People who say this usually have absolutely no idea about our illness and how it can affect us, giving them absolutely no right to even say that. I have had this said to me a couple of times, from both friends and family. It can be so hurtful to be told this when you know that the truth is you are very poorly and it isn’t in your head at all. People who say this have absolutely no right in my opinion to even be allowed to say it until they know absolutely everything about our chronic illnesses that we are going through. Maybe then they’ll learn that it is NOT in our heads at all.
‘You’re taking to much medication’ – Being told that us who are chronically ill are taking too much medication, while yes it’s not good for our bodies it’s so much worse for us if we don’t take our prescribed medications. It can be impossible to function without taking them, we can be doubled up in pain and unable to move without them, that’s why it’s absolutely vital for us who do have to take medication that we take them as prescribed by our doctor. If we had the choice we would rather not have to take any medications but without them we wouldn’t be able to get out of bed, get dressed and do basic day to day tasks. The medications I take some of which are; morphine, tramadol and duloxetine are so important that I take because otherwise I get in so much pain that I can barely move or get out of bed. I think those that aren’t chronically ill don’t realise just how much pain some of our illnesses can really cause.
‘Everybody gets tired’ – While it’s true that everybody does get tired, normal person tired is so different to the tired that us with chronic illnesses experience. When you get tired you know that if you have a sleep you will feel better however us who are chronically ill with illnesses such as M.E and Fibromyalgia can sleep and sleep but we will still wake up just as tired as before we went to sleep. Fatigue is different to being tired, it’s there when you wake up, it stays with you all day, its a lack of energy and a feeling of physical, emotionally and mentally exhausted. It never goes away.
‘It can’t be that bad’ – Sometimes I wish that for those who don’t know what it’s like to experience the pain and fatigue I feel could just experience it for a day and then tell me that it can’t be that bad. I definitely think it’s true that if you haven’t experienced what someone else is going through then you won’t properly understand what it’s like until it happens to you. It’s hard to make people understand how fatigued you really feel and how much physical pain you are in when they haven’t been through it themselves. We can tell people how we feel and they can try and understand and sympathise with us or they can just tell us that ‘it can’t be that bad’ and we are just over reacting.
‘You need to get out more’ – I myself suffer from Fibromyalgia and M.E and I know that trying to get out more is so much harder to do than someone who isn’t chronically ill. I have been told a lot of times that I just need to get out more, and for those that don’t understand it can be very hard to tell them that that’s nearly impossible for us sometimes because of symptoms like light and noise sensitivity and that by the time we’ve got out of bed and got dressed we are completely exhausted and have to just go straight back to bed. If we can get out for a tiny bit it may take us days and weeks of recovery time just from doing something like walking to your local park or going to the supermarket to get some shopping. When I personally feel like I’m able to leave the house I do it at my own pace and in my own time. We have to remember to pace ourselves or we will get more ill and will be less likely to get out again for a while. People don’t realise how much we have to do before we actually leave the house and how much energy it takes for us to do these things. We have to get out of bed, get dressed, take medication, have a wash, breakfast (depending on the time of day), bearing in mind after each of these things that we do will probably require taking frequent rests. Before you say ‘you need to get out more’ to someone with a chronic illness, just think about how energy consuming and how difficult it can be for us to do this. All we want is to be able to get out and do things and as soon as we feel well enough to do that then we will.
‘You’re just depressed’ – When having a chronic illness being told that ‘you’re just depressed’ is something that we hear many of times. We hear it from friends and family and even from medical professionals. Before I was diagnosed with fibro and M.E doctors told me I was just depressed, it wasn’t until I saw specialist doctors and was diagnosed with my chronic illnesses that meant that I wasn’t just depressed. However, by the time I was diagnosed and my health had deteriorated very quickly I had become depressed because I was in pain and nobody knew what was wrong with me. Having a chronic illness that causes extreme pain and fatigue is bound to make anyone feel low and depressed. To make things worse when I had to stop college because I was too poorly to continue made me very upset, I have missed out on so many opportunities and lost many friends who fail to understand what I’m going through making me feel more depressed. My illnesses didn’t happen because I was depressed, my depression happened because of my illnesses.
I hope that from reading this that those of you who know a friend, family and loved ones who suffer with chronic illnesses that you will learn the things that aren’t helpful for us and also the things that are encouraging to say. I will be doing a blog post about things chronically ill people want to know.
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All my love,