This was not written by me but is from the A Sweet Life Website 15 things not to say to someone with a chronic illness or invisible illness
Invisible illnesses are illnesses that you can’t see just by looking at someone. Things like Type 1 diabetes, Chronic Migraines, Lupus, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia and Cyclic Vomiting Syndrome. These may not affect your appearance, but they affect how your body functions and feels. Every day. Probably for the rest of your life.
When you say the following things to someone with a chronic illness, you probably don’t mean to hurt their feelings. A lot of the time you are just trying to understand or sympathise. Well, from the perspective of someone who lives with a chronic illness, here are 15 things you should never say to someone with a chronic illness:
1. You don’t look sick
Not everyone “looks like” what is happening to them. You would never say “you don’t look like someone who is going through a terrible divorce” if your stressed out friends still manage to put on a brave face and pull themselves together. Not all illnesses are manifested outwardly.
2. You’re too young to be sick
I get this one more than #1. You can get ill or go through any kind of stressful situation no matter your age. Age is completely irrelevant here. Young, unfortunately, does not always equal disease-free. When you tell someone they’re too young to be sick, it just makes them feel even more guilty or embarrassed for having an illness they have no control over when society expects them to be healthy. And, moreover, just because you have an illness, doesn’t mean you want to be called “sick.”
3. Everyone gets tired
That may be true. And most people are not getting enough sleep and rest. But the difference between someone with chronic illness associated fatigue and an otherwise healthy person is the level of fatigue. If I go out drinking with friends and stay up late, it could take me a week to recover. I have to carefully plan every activity of the day so that I can save energy to do all of them. The best line I’ve heard for this one is: you don’t know what fatigue is until you’ve had to rest after taking a shower. Unless you literally think to yourself“how much energy will that take?” for every single action you take during the day (including brushing teeth, combing hair, standing to do dishes, putting on makeup, cleaning, driving, etc.) then you experience a completely different kind of tired than people with certain chronic illnesses. I’m not saying you aren’t tired. Everyone does get tired. But my kind of tired is not the same as a healthy person’s kind of tired. If I push myself past the amount of energy I have in a given day, the consequences are pretty bad. See the spoon theory for more about this one.
4. You’re just having a bad day
I know you are trying to motivate someone and make them feel better when you say this, but it doesn’t come off like that. Personally, only about 10 people in my life see me on my bad days. If I am outside, dressed, and active, that is a good day. So instead of making someone with a chronic illness feel supported and motivated when you say this, it feels like you are brushing off their symptoms. Chronic illnesses are with you for life. You can change your lifestyle and find treatments to help them, and some of them can be “managed,” but for the most part, that person will have to deal with a lot of bad days for many years to come.
5. It must be nice not having to go to work/school
This one. Oh man. If you only knew. Sure, it can feel that way when you take a day to play hooky or a long vacation. But when you are forced not to go to work or school, even when you want to be there, it is a different story. People with chronic illnesses don’t want to fall behind in school and fight with the school district to get the accommodations they need. People with chronic illnesses don’t want to miss work and not be able to generate an income. Everyone wants independence.
Personally, I loved school and hated every day I wasn’t there. It is way more stressful not being in school and knowing all the work you will have to do to make up for it than being there on any given day. And I have loved the jobs I’ve had and been sad about every day I have missed. Believe me, it is not nice having to stay home instead of being productive, just trying to find ways to distract yourself from pain or exhaustion. It’s fun to watch TV for a day or two, but after that, I feel trapped. I guarantee anyone with a chronic illness would gladly trade in their symptoms for a full time job.
6. You need to get more exercise
Exercise is really important and no one is denying that. It helps pretty much any health condition. But it isn’t a cure-all. For someone like me, whose heart rate regularly reaches 120 bpm just from standing still, exercise isn’t always doable. I do “exercise” but it is more like physical therapy exercises than what most people would consider a good work out. But remember, everyone has limitations. For people with chronic illnesses, their physical limitations may make it harder for them to do traditional exercises. And even if they do, it will probably not be a cure for a condition that is caused by something totally different like an immune system that attacks itself or a nervous system that doesn’t regulate itself correctly.
7. I wish I had time to take a nap
See numbers 3 and 5, which relate to this one. To someone with a chronic illness, to whom napping is not a luxury but in fact a necessity, hearing someone say this is as much a slap in the face as hearing someone say they wish they could take a break from work or school too. Hearing anyone “wish” they could have a part of a chronic illness just shows how misinformed they are when they say this. Wishing you had more time is pretty much a universal wish. But wishing you had the time that a person with a chronic illness has is not the same. If your wish is granted, you can get more time, but you also have to get the pain, the exhaustion, and the difficulty figuring out how to be productive in society. Remember that next time you have the desire to say this.
8. The power of positive thinking
Positivity is really important and having a negative outlook can negatively affect an illness. But having a positive outlook will probably not cure it. I’ve gone through all the stages of positive thinking and denying my illness. I have thought, if I just put my mind to it, I can do that. And then I’ve suffered the consequences of pushing myself beyond my limits.
Positive thinking that is productive for chronic illness sufferers is not telling someone that thinking positively will help them with their symptoms. Instead, productive positive thinking is finding the positivity that comes with their illness. For me, if I hadn’t had POTS, I wouldn’t have gone to Lake Forest College to stay close to home and my doctors. It was there that I learned and discovered my passion for environmental studies and met the love of my life. I wouldn’t have found an inner strength in myself and learned to value the time I have in the same way I do. That is productive positive thinking. But it’s not a cure.
9. Just push through it
Hearing this makes me want to hit my head against a wall. This goes along with #3 “Everyone gets tired/ headaches/ back pain/ insert symptom, just push through it.” The problem with this statement is the underlying assumption that a person with a chronic illness is not already pushing themselves. Every day I push myself. I push through my symptoms all the time. If I didn’t, on my bad days I would not eat, walk, or shower. And the same is true of anyone with a chronic illness. Remember: there is a difference between pushing and pushing past your limits. Pushing yourself is good and necessary. But pushing past your limits can set someone with a chronic illness back for a while as they recover from overextending themselves. Suggesting to someone to just push through it may not feel insulting, but it is like telling a marathon runner to just go faster on their last mile.
10. It will get better, just be patient
I’m sure everyone who says this truly means well. And it is true of a lot of things that patience is important. But not all chronic illnesses will get better. Patience is a virtue, and an important one. But please don’t say this to someone who has an illness that they will have for their entire life. It could get better, but it also may not. So figuring out how to live within the confines of your illness and make the most of it is more productive than expecting to get better. This is not to say that you shouldn’t hope to get better- just that you shouldn’t count on it. That’s denial.
11. Have you tried…
the paleo diet, acupuncture, super magic moon crystals, this weird new therapy that I heard about one time but know nothing about? Unless you are a medical professional and/or a person with a chronic illness has asked for your advice, please keep it to yourself. I haven’t tried super magic moon crystals, but I have tried just about everything else including alternative and new treatments. I’m actually trying a new one now. And I probably won’t stop trying because science makes advances. But someone with a chronic illness doesn’t want to defend themselves to you on how they have already tried or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal. I know you probably mean well and are trying to help, but just assume that someone with a chronic illness has tried every option available to them. Everyone wants to feel good.
12. You should stop...
See number 11. I know you mean well and you want to help. Everyone has bad habits they should probably stop. Did you know that one of the parts of my treatment is to increase sodium in my diet? So if you want to tell me how you or someone you know of feels so good because they cut out salt, it will go in one ear and out the other. What works for one person does not always work for another. Please keep your unsolicited unprofessional anecdotal medical advice to yourself, because you are wasting your time and possibly insulting or discouraging someone with a chronic illness.
13. It’s all in your head/ you’re just stressed/ depressed/ anxious
If I had a nickel for every person (including doctors) who told me this before I was diagnosed with POTS (and some afterwards) I would have really heavy pockets. I guess when we don’t understand something and don’t look physically sick we assume it is mental. It must be cultural or part of human nature based on how often this is said to people with chronic illnesses. Stress, depression, and anxiety can all make symptoms of chronic illnesses worse. But they do not usually cause them. Chances are when you say this to someone you are only contributing to their stress, not helping them see something they never saw before.
14. You need to get out more
A change of scenery can do some good. And I believe that spending time outdoors is good for your health. But when you say this to someone with a chronic illness, it doesn’t sound encouraging. Someone with a chronic illness wants to get out more (see number 5). All it does is make them feel guilty for not being able to do something they already want to and are probably trying to do. So before you say this, remember that they probably agree with you and they don’t need the guilt on top of it.
15. You take too many medications
People differ on their opinions of whether medications help or are bad for you. In some cases they are medically necessary. This is one of those things where you should probably keep your judgement to yourself. If I take a medication, I have researched the side effects and I have tried every other lifestyle change and vitamin that I can before I get to that point. Not everyone wants to just pop a pill to solve a problem. If someone is having a symptom that is controlling their life medication is sometimes the best way to manage it. People with chronic illnesses do many things to try to live as normal life as possible, and medication is one small piece of that puzzle. It is part of a lifetime of adaptations, treatments, and figuring out how to live with a chronic illness.
So now that you know better than to say these things, you can relate better to the people in your life with chronic or invisible illnesses.
And remember: the absolute best and most powerful thing you can ever say to someone with a chronic or invisible illness is:
I believe you.
You would be surprised just how much that will mean to them.
Causes of CVS #CyclicVomitingSyndrome
The exact cause of cyclic vomiting syndrome is unknown. Although nausea and vomiting are the main features of cyclic vomiting syndrome, researchers now believe that the primary organ affected is the brain and that the symptoms of the disorder develop due to abnormalities in the normal interaction between the brain and the gut (brain-gut disorder).
Although the specific cause of cyclic vomiting syndrome is unknown, likely there are several causes. Researchers have noted a relationship between cyclic vomiting syndrome and migraines, and some theorize that cyclic vomiting syndrome may be a migraine variant. Many children with cyclic vomiting syndrome have a family history of migraines or develop migraines when they get older. Cyclic vomiting syndrome may be referred to as a type of “abdominal migraine” and the terms are sometimes used interchangeably. An abdominal migraine is a migraine variant in which there are recurrent episodes of abdominal pain. Vomiting may or may not accompany an abdominal migraine.
Additional factors that may be associated with the development of cyclic vomiting syndrome include dysfunction of the autonomic nervous system. The autonomic nervous system is the portion of the nervous system that controls or regulates certain involuntary body functions including heart rate, blood pressure, sweating, the production and release of certain hormones, and bowel and bladder control. Autonomic disturbances are common during episodes, including fever, tachycardia, high blood pressure and urinary retention (blockage). Vomiting itself is an autonomic disturbance. Autonomic or “functional” disturbances can also occur between episodes, such as reflex sympathetic dystrophy (a chronic pain condition), syncope (fainting), and disorders of gastrointestinal motility. The latter are particular common, and can include gastroesophageal reflux (GERD, explained below), delayed gastric emptying (resulting in bloating during meals), irritable bowel and/or constipation.
Additional conditions sometimes seen in individuals with cyclic vomiting syndrome include depression, anxiety, attention deficit hyperactivity disorder (ADHD), seizures, autistic spectrum disorders and learning disabilities
Some research indicates that the dysfunction in the body’s response to stress may contribute or trigger episodes of cyclic vomiting syndrome. Affected individuals may experience altered release of corticotrophin-releasing factor (CRF) from the hypothalamus, the portion of the brain that controls the production and release of certain hormones. CRF is a stress hormone that stimulates the adrenal cortex, which controls the body’s response to stress. Some research has indicated that CRF may cause vomiting.
Researchers have also learned that, in most cases, blood and urine testing reveal signs of abnormal energy metabolism. In many of those cases, changes (mutations) of genetic material found in the DNA of mitochondria (mtDNA) play a role in the development of cyclic vomiting syndrome. Mitochondria, which are found by the thousands in the cells of the body, particularly in muscle and nerve tissue, produce the vast majority of energy that is required for the function of biological processes. As opposed to the genetic instructions of cellular chromosomes (nuclear DNA), which are found within the nucleus of each cell, mitochondrial genetic instructions are found outside of the nucleus of the cell. The exact role such mutations play in the development of cyclic vomiting syndrome is unknown.
Mutations affecting the genetic instructions for mitochondria (mtDNA) are inherited from the mother. MtDNA found in sperm cells typically is destroyed following fertilization. As a result, all human mtDNA comes from the mother. An affected mother will pass the mutation(s) on to all her children, but only her daughters will pass the mutation(s) on to their children. As a result, family members related entirely through women carry the same mtDNA genetic sequence. In half or more of CVS families, those relatives often suffer themselves from dysautonomic or functional-related symptoms, especially chronic pain (including migraine), bowel disorders, and depression.
The exact way the above mentioned factors and additional, as yet unidentified, factors interact to cause cyclic vomiting syndrome is unknown. Research is ongoing to determine the cause and underlying mechanisms that result in cyclic vomiting syndrome.
This is a group that sends a stuffed animal CVS Warrior to anyone who wants to take part. It will include a scrapbook with stickers, some pens and other materials. You may also use your own supplies. Each person will have 1 page they can decorate or write what they would like. Please include a First Name, Last Initial and Where you are from at the minimum. Take your Warrior with you to various places and take pictures of the Warrior on Adventures or just hanging out, and post here. Let's see how far around the world our Warriors go :). There will be a total of 4 Warriors to choose from. You may request which one(s) you would prefer if you do have a preference. The Choices are "Sir Emesis, The Spartan Warrior", "Elly the Emesis Elephant", "Hannah the Healing Hippo" and " Walter My Warrior Walrus" You can request as many turns as you like <3 There will be shipping fees so please keep that in mind. To sign up - go to "files" choose your warrior and fill out the document with full name, mailing address and email. Stop by the "disclaimer" and acknowledge this is "at your own risk" Any questions....just ask. This is just something fun to show adults and kids alike who suffer that they are NOT alone!
The link to the group is www.facebook.com/groups/1383577585057974/
Our new CVS Network theme.
Helping raise awareness of cyclic vomiting syndrome
Find it below
Woman suffers rare condition that makes her vomit up to 100 times a day – for a week at a time
Diseasemaps connect people with chronic and rare diseases and other syndromes and conditions using maps. Diseasemaps want to spread awareness about these conditions and show people who suffer these diseases/conditions that they are not alone. There are thousands of people living a similar situation willing to help others to find a way to get better.
CVS Network was founded on 26th April 2011, it was followed by our Facebook support group on 7th April 2013 and finally by our Facebook posters page on 13th July 2013. since the CVSN has grown and so has the awareness we bring to Cyclic Vomiting Syndrome. We opened our website on 9th December 2015 and we're going from strength to strength.