Friday 23 May 2014

7 things not to say to a chronic illness sufferer

I'm still relatively new to living life with a chronic illness but on saying that I will say I do have a lot of experience. I've been living with chronic illness for just over 5 years now. In those 5 years my life has completely changed and it truly is nothing like what I imagined it would be when I was little. During my 5 years living with chronic illness I have experienced a whole range of things happening. Sometimes those have been positive, but the majority have been negative. My main focus today is people's attitude toward those living life with a chronic illness. People will often say things and to them it seems like the right thing to say to someone but to the person with the chronic illness it is taken wrongly. Until you live even a day in the shoes of someone with a chronic illness you should NEVER judge.


1. You don't look sick

This is the harsh reality for many sufferers of chronic illness. It has been estimated that approximately 96% of all chronic illnesses are invisible illnesses. What this means is a lot, if not all of the time, the person suffering does not resemble that of a sick person. They look "healthy" from the outside but if you were to see inside then you'd realise it's a completely different story. Illnesses like: depression, asthma, epilepsy, bipolar, cystic fibrosis, chronic pain, polycystic ovarian syndrome, arthritis etc. these are just a few of the invisible illnesses which exist. You may not even realise the person is suffering from a chronic illness because they show no outward signs. For people who have instances of being really unwell and being healthy again (such as asthmatics, epileptics, people with bipolar etc.) the only times they may seem like they're ill is when they're physically having an "episode" of their illness. I've had many people tell me that I look healthy. The reality is people only see me when I'm not extremely unwell, they see me on my good days when I can mostly breathe freely and don't have a seizure. Very few people have actually seen me really unwell.


2. You're such an attention seeker

Many people who suffer chronic illness find it becomes a very lonely world to live in. They feel really alone and like no one understands what they are going through. In an attempt to try and let other people into their lives they may post pictures or pieces of writing, quotes etc. on their social media sites or show other people. Most of the time they're not trying to gain attention from people or trying to make people feel sorry for them, they're trying to get people to understand what it's like to live with their chronic illness/es, they're trying to raise awareness because the reality is it doesn't matter how many people are suffering with a condition there is never enough awareness for that condition. A lot of people who come across things the sufferer posts understand and they become more aware but then you get people who go about calling them an attention seeker. People can be really cruel, they'll call you a drama queen, they'll say you over-exaggerate but the truth is they will just never understand. Nobody truly understands until they have walked a day in life of that person. 



3. You're just faking it

Further to my point above, some people don't post things online about their illness and although they do not get called an attention seeker they will get called a liar. I remember when I was younger and had first been diagnosed, I didn't post things on facebook to do with my illnesses and someone else who was actually suffering with a chronic illness themselves said to me that I was a liar because if I really was suffering then I would want people to know. I would post it everywhere  because it is my life and I shouldn't be ashamed of it. The reality is we can't win...we post things we get called attention seekers...we don't and then 
we're liars. 



4. Lose some weight it will cure you 

I have heard this sentence so many times now from so many different people. It may seem like the person thinks they're trying to give you some advice but it just becomes so tedious and I think "God if only it was that simple". It is so much harder than simply "losing weight". The reality of the situation is many chronic illness sufferers have to take daily medication, whether it be to keep them alive, keep them healthy or even just their illness at bay...often these medications will have a variety of side effects. One of them on a lot of medications is "weight gain" some even have "increase in appetite". It's not just a simple case of exercising and eating healthy, it's a case of the medication often contributes to people being the way they are. Another reason it's more difficult is often chronic illnesses make it difficult to do exercise. Conditions which affect your breathing, cause pain, make it difficult to function in social situations...these just a few examples of why exercise may be difficult for a person. 



5. It's just a cold

The amount of times people say this...to a healthy person a cold is a sniffle, a cough etc. something which they can get over within a week or so (sometimes less). For someone who's immune system is not that of a healthy person...a cold isn't just that simple. For example, a cold for someone asthmatic is potentially a chest infection, a hospital stay, time in Intensive Care or High Dependency. It really stunts you and puts you back and stops you functioning properly. It isn't just a cold, it is something which could prove fatal to someone with a compromised immune system.



6. You have no time for me

For someone with a chronic illness it can be really difficult for them to spend time with others. It can be down to them having extremely bad anxiety within social situations, or it can be that they need to stay away from others because they're unwell, or it can even be they have been admitted to hospital. So many times I have had to cancel plans with people due to being unwell or being in hospital. I've missed out on a lot of drama shows, interviews, time with friends due to being unwell and people just do not understand. It makes you feel really guilty when you have to cancel plans which affect others. Sometimes you cannot even cancel them because you are so unwell that you have forgotten, all you are doing is sleeping or you cannot even text or call someone. People often think they are being ignored or pushed aside but it is most likely not the truth.


7. You're such a burden to everyone

Often you feel this way but the last thing you want to hear from someone who is meant to care about is that you are a burden to them. It does not help things, it stresses you out and it makes you feel genuinely crap about everything. Chronic illness is hard enough to live with but people often make it so much harder by what they say. We did not chose to live life this way, it is our life and the reality is if you cannot accept that then you do not deserve to be involved in that person's life. It is not our fault that we have this condition/s, it happened and we have to live with every single day. It is hard for us but I have no doubts about it also being hard on those around us. It puts a strain on relationships between people (family, friends, partners) but in the end it shows you who truly should matter because the ones who care enough to stick around and not be put off by your illnesses, treat you as a human being rather than an illness are the ones who are are worth it.


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