Saturday, 24 May 2014

But you don't look sick!


As part of Invisible Illness Awareness Month, I've been having a think about my own experiences of being ill and how people around me have perceived this. I've generally been relatively lucky when it comes to people I care about accepting my illnesses, but that's not to say I haven't been subjected to the odd daft comment, generally from people who haven't taken the time to try and understand. One problem I regularly come across when talking to healthy people, is that they are often worried about saying the wrong thing to me (or someone with a long-term illness) so tend to drift away. It's something I can understand completely. Before I became very unwell I knew of a couple of people with serious illnesses, and I was terrified of saying the wrong thing to them and would sometimes make up excuses to get out of seeing them. It's not something I'm proud of, but now I can see it from both perspectives I can see how pointless it was to worry so much that I ended up avoiding them. I therefore thought that I would use my experience to talk about what not to say to someone with a serious, long-term illness. However, I also thought it was important to give a few ideas about things you could say. Obviously this is just my point of view (with a little help from some of my poorly friends) but hopefully it will give a bit of insight and help you feel less anxious if you encounter this sort of situation in the future.

- You look so well/But you don't look sick:

This comment has always baffled me slightly, because I'd love to know what you're meant to look like if you're ill! Yes, sometimes someone can look ill, but some of the most poorly people I have met have actually looked pretty normal! You can disguise an awful lot with a wig, some make-up and slightly baggy clothes, when, underneath, you might be losing your hair from chemotherapy or have a feeding tube going directly into your intestine. Even if someone doesn't have any physical signs of illness, it doesn't make their suffering any less. I know people often think they're paying a compliment to say someone looks well, but when you're feeling awful it can feel quite frustrating for people to assume you're fine just because you look ok.

These photos of Lizzy try to demonstrate the different faces of invisible illness

- I'm disabled but would never choose to use a wheelchair:

I think this type of comment in particular can be incredibly hurtful. The idea that someone chooses to use a wheelchair (or any other aid) is quite frankly ridiculous. Yes, there might be the odd person out there that uses aids for reasons other than disability, but the vast majority of people rely on the use of aids because they have to. Certainly for myself, and a lot of my friends, using a wheelchair can be the difference between being completely housebound and being able to get outside now and again. We wouldn't use aids like a wheelchair, bath board and so on if we didn't have to. We use them because they help us to achieve some sort of normality. They allow us to access parts of life that would otherwise be off limits.

Without my wheelchair there would have been large amounts of time I would have been completely housebound

- But you're well enough to work so you can't be ill:

Just because you see someone working doesn't mean they don't experience consequences for that work. They may work part-time because trying to do any more would leave them too unwell. Work may be the only thing they do - it's likely that if someone is trying to work with an invisible illness they may not have the energy for a social life. There is so much stigma attached to claiming benefits, mainly because the only cases we hear about are those who abuse the system, but this can have a massive affect on the people who really do need to claim them. I know so many people who make themselves more ill trying to work, just so they don't have to claim benefits and be labeled as lazy or scroungers.

I take large amounts of medication each day so that, at times, I can try to work through some of my symptoms


- You're just tired because you haven't done anything:

This particularly applies to illnesses like M.E and Fibromyalgia, where a key symptom is fatigue. I've heard so many times people being told they only feel tired because they're not doing anything all day and lazing around the house. I really wish this was the case, but it simply isn't. With invisible illnesses like these, something as simple as eating breakfast or trying to wash yourself can set you back for weeks at a time. So imagine how ill it could make someone if they pushed themselves to do more than their body can tolerate. I've done it myself on more than one occasion, trying to prove to people that I'm not lazy, and suffering the consequences for doing so.

- Do some exercise it will help you sleep:

This ties in with the previous comment to some extent. Exercise does not automatically equal better sleep. Instead, it can result in intense pain, weakness, nausea and so many other nasty symptoms. Insomnia is a huge part of a lot of invisible illnesses for a whole host of reasons.

- You're just lazy:

This couldn't be further from the truth for the majority of people with invisible illnesses. Yes, like in all aspects of life, there are people who abuse the system because they can't be bothered to work, but all of the people I know who experience long-term illness would like nothing more than to be able to participate in everyday life. It's awful being told you're lazy when all you really want to be doing is working, socialising and generally living life to the max. For me personally, I have so many things in my head that I want to do - going to Uni, finding my dream job, volunteering, partying and so much more. It's hard enough not being able to do these things without having the label of lazy attached to you as well. Before I became seriously unwell I was a busy teenager, who rarely stopped to watch TV or sit down.

- You're so lucky to not have to work/study:

People may imagine it being luxury to lie around and sleep all day and not have to work, but it really isn't. I think people can often forget that yes, we do spend a lot of the day doing not much, but we actually feel unwell at the same time. Symptoms such as exhaustion, pain, sickness and dizziness plague each and every day, so the idea of going to work or being able to study and feel well feels like a completely unattainable goal. Please do think twice before telling someone how lucky they are because there's a lot more to illness than lazing around watching daytime TV.

Is it really lucky to be confined to bed, not being able to tolerate light, sound and even touch sometimes?


- When will you get better?:

This question isn't necessarily a bad thing to ask, but it depends on the situation and how the person is feeling. For example, if you know someone with cancer, epilepsy or M.E, it isn't really appropriate to ask them when they're going to get better. Partly because there is a chance they won't get better, but mainly because they really don't know and could do without being reminded of the uncertainty of their illness. I also feel that this question puts a great deal of emphasis on the person having control of when they will be well again, when, in reality, they have very little control over their physical health.

- Get well soon:

This is another grey area as far as I'm concerned. When I first started getting ill I received quite a few 'Get Well' cards, which was perfect at that time in my illness. At that point we didn't know I had a chronic illness, so the expectation was that I would get better soon. Knowing that people cared enough about me to send me a card was incredibly touching. However, if you know that someone has a long-term or chronic illness, get well probably isn't the most tactful sentiment to send them. To be honest once you've been ill for a few months you tend to stop receiving cards anyway, but some of the cards that have cheered me up the most were those with no writing on them, but instead had cute pictures or funny cartoons. It can really help to know someone is thinking of you, especially after months or years or your illness, so if you know someone with a long-term illness I can really recommend sending them the odd cute card.

This is an example of a card and gift that I really appreciated, with no mention of my health at all


- Well at least you don't have (Insert other illness):

This comment probably angers me the most. I've lost count of the number of times I've been told I'm lucky because I don't have cancer/M.S or another serious illness. Yes, I realise it could have been so different if I'd been diagnosed with something like this, but it really belittles the suffering I am going through. It's a common misconception that M.E isn't serious, but the truth is that people do die from complications related to it. That goes for other illnesses too. Just because we don't have a high profile illness, does not mean we are lucky. Imagine being told you have an illness that could potentially paralyse you, leave you needing to be tube fed and rob you of years of your life. Then imagine the doctors telling you that they don't really know what is wrong with you, or how to treat it, so you will be left to cope with it alone and often be branded a lier or hypochondriac. It's not a competition between illnesses, but please don't belittle what anyone is going through, no matter what their diagnosis might be.

- You obviously don't want to get better because you won't try this special diet/confess your sins and be bathed in detox etc:

I always struggle with this kind of comment because I don't like having to justify my illness and the choices I make because of it. I've found that having a diagnosis of M.E opens you up to all kinds of suggestions and opinions (not always particularly nice ones either). I'm always happy to hear what people have to say, and a lot of the time it comes from people who are genuinely interested in helping you to feel better. But I wish that people could leave it at that, a suggestion, and not make me feel bad if I choose not to take their suggestion any further. I know my body and my illness, and there are some 'treatments' that I just wouldn't feel comfortable trying. Although I'm a Christian, I'm really not a fan of being prayed over/healing retreats or anything like that. I know they help some people, and that's great, but it's just not right for me, especially when I'm already finding my faith a huge struggle. Same goes for other treatments. I also find it quite inappropriate when people that haven't bothered to speak to you for years suddenly appear, pretending they care about you getting better, and then try to sell you some new fad they've started selling. I'm sorry but please don't insult me by pretending you care when all you're really interested in is making money. Until something is proven to work, I will do what works for me personally.

- You're obviously just depressed:

Firstly, there is no such thing as being just depressed. Depression is an illness in itself that can completely take over your life. But just because I have an illness that isn't fully understood, does not mean I am automatically depressed. Chronic and invisible illnesses can cause depression, but then so can other illnesses like cancer, HIV and MS. I wish people could understand how frustrating it is to have your symptoms blamed on mental illness. Like I've said before, I know my body and I know my symptoms are from a physical illness, so the last thing I need is people fobbing me off or judging me.

Yes, I may suffer from depression, but this is alongside my physical health problems, and I always try to be positive and make the best of my situation


- You're not trying hard enough:

This is pretty offensive and if you really knew me you'd see how hard I try every single day. I try and drag myself out of bed each day, even if I'm really unwell, and very rarely do I not change my clothes and brush my teeth. These might only seem like little things, but when you're feeling awful just getting out of bed is an achievement. This is not what I thought my life would be. I have dreams and ambitions just like any other person, and every day I try everything I can to try and get myself a little bit closer to achieving them. But, I've also had to accept that my body doesn't work properly, and there might be some things I can't do in the same way a healthy person could. This doesn't mean I'm not trying though. Every day I look for different ways to achieve things that healthy people take for granted.

- I know someone who had that - they did this treatment and now they're fine!:

Again this can often be said from a place of care and concern for your health and recovery. Like I've said, I'm happy to hear the opinions of others, but you have to understand that everyone is different and what helped one person may not help another. With M.E, this seems to be a particular problem. I'm often told that I should do The Lightening Process or GET (Graded Exercise Therapy) but I don't personally agree with either - there is so much secrecy about LP and GET has been shown to make a lot of people more ill. I don't see why I should be judged just because I'm cautious about so-called miracle treatments.

- But you've got so much going for you:

This might be true, but what does it have to do with me being ill? It's not a choice I have made. It has happened to me through no fault of my own. Anyone can get ill - good or bad, old or young. Telling me I've got so much going for me just makes me feel sad because you're reminding me of what could have been if I hadn't become ill. Saying that, just because I'm ill doesn't mean I no longer have anything going for me. Some of the most amazing people I know are incredibly ill. I have poorly friends who have set up charities, done huge amounts of media work to raise awareness and raised hundreds of pounds for good causes. We are just as important to society as healthy people are.


What to say:

- Tell me more about...illness/symptom:

I really wish more people would ask questions about my illnesses. I can understand that people are probably hesitant to do so, as they worry how I might react to talking about my health, but in all honestly I'd rather talk about it. It's a massive part of my life and I feel happier when people acknowledge that and don't tiptoe around it. I want to help educate people so they understand more, and talking about it is the best way to do this. If we all talked more about health it would quickly lose the stigma of being a taboo subject. Obviously don't expect someone to go into detail they're not comfortable sharing, but if you've got a question feel free to ask it. What's the worst that can happen?

- I know someone with ... so have some understanding of what you go through:

This is a great thing to say because, while acknowledging that you don't know exactly what someone is going through, it shows you are trying to understand. It can be particularly helpful for people who have little energy, because it means they don't feel the need to explain everything to you. It can also be a good way to start a conversation with someone if you'd like to know more about their condition.

- Take things one-step at a time:

Hearing someone say this feels like such a relief. A lot of the time I'm constantly worrying about the future or trying to do more than I'm able to, so for someone to really understand how hard this is and reassure me that it's ok to take things slowly is fantastic.

- You don't need to put on a brave face with me - I'm here for you however you are:

You know you've got a real friend if someone says this to you. I spend so much of my life putting on a brave face pretending I'm ok - it's exhausting. Sometimes it's nice to just be how I really feel with someone without worrying they might judge or ditch me. Very few people have actually said this to me, which shows how special those that have said it are.

Having friends and family who accept you no matter what is such a precious thing


So, there we have it! I hope this has been enlightening and if you've found it helpful please do share it with others that you know. The more we talk about these things the more awareness and understanding there will be, which can only be a good thing.

Have you found this post helpful at all, or can you relate to any of the comments? I’d be really interested to hear opinions from both sides


your photo name

8 comments:

  1. Really enjoying this series of posts. I can relate to the 'get well soon' one amongst others- I always get well-meaning family members saying they hope I feel better soon or that they're sure the pain will pass, and it does tend to get me down a little. Thanks for another great post! x

    Natalie | Broke Student Fashion

    ReplyDelete
    Replies
    1. Thank you Natalie, I'm glad you are enjoying my posts and I hope it has helped hearing you're not alone in receiving frustrating comments. I'm sorry to hear that you also suffer from medical problems - I'm always happy to chat to people about anything really, so you're always welcome to e-mail me :) xx

      Delete
  2. Very brave of you to write. I too suffer an invisible illness - depression and anxiety, and I also have difficulty walking so use a wheelchair. Some days I can't get out of bed - it can take my partner hours to get me confident to do it and face life. So pleased to see someone else writing about it. Much love xxx

    ReplyDelete
    Replies
    1. Thank you Jackie - I'm so sorry to hear that you also suffer from mental health difficulties and trouble walking. I hope it has helped somewhat to know you're not alone in this and there is support from others out there xx

      Delete
  3. Aww first of all I'm sending you a big virtual hug. When we meet I will give you a huge hug!!! So brave you are and I recognize myself in everything you've written. I too suffers from mental illness, but also from one invisable illness Meniers Disease. I also most probably have got young onset Parkinson's so things are not easy, but for now, I'm still working full time, run my blog and are happy in life. You got to stay positive and I love reading these posts from you. xxx

    ReplyDelete
    Replies
    1. Thank you hun - big virtual hugs back :) Gosh hun it sounds like you have so much to deal with, but it's fantastic to hear how positive you are and how much you're making the most of what you can do at the moment. If being ill has taught me anything, it's that I no longer take the little things for granted, and that there's no point in waiting to do things when you can do them today! Hopefully one day a meet up would be amazing! Where abouts in the world are you? xx

      Delete