Sunday, September 28, 2014

In the Blogs: 15 Things NOT TO SAY to Someone With a Chronic Illness orInvisible Illness




By Susie

It’s difficult to know how to deal with a friend or loved one who has a chronic or invisible illness. We learn that when you are sick you treat it and it goes away. Chronic conditions don’t go away. They are hard to understand.

Invisible illnesses are illnesses that you can’t see just by looking at someone. Things like Chronic Migraines, Lupus, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, etc. don’t affect your appearance, but they affect how your body functions and feels. Every day. Probably for the rest of your life.

When you say these 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 sympathize. Well, from the perspective of a chronic illness sufferer, 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 friend still manages to put on a brave face and pull themselves together. Not all illnesses are manifested outwardly. And chances are, on the days that you are seeing someone with a chronic illness, it is one of their better days because they are out at all. Everyone is going through some kind of struggle in their lives, and chances are, you can’t see it on the surface.

2. "You’re too young to be sick."

I get this one more than #1. We expect teens and 20-somethings to be the picture of great health. And a lot of people get illnesses as their bodies age. But no one is “too young” to be anything. You can get any kind of illness no matter your age. You can go through any kind of stressful or positive situation no matter your age. Age is completely irrelevant here. Young does not always equal healthy. When you say this to someone who is young 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.

3. "Everyone gets tired."

That may be true. And most people are not getting enough sleep and rest. But the difference between someone with a chronic illness associated with 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. My favorite 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 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 “cured,” but for the most part, that person will have to deal with a lot of bad days for a lot more years. Hearing this can be discouraging.

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 whole different story. People with chronic illnesses don’t want to fall behind in school and fight with the school district to get 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- you feel trapped. I guarantee anyone with a chronic illness would gladly trade in their symptoms for a full time job. Some people just aren’t physically capable of that.

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 suffer 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 where 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 literally 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 while 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 and I will admit that I made those up, 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. Physical evidence is being found in illnesses that were thought to be “in patients’ heads” all the time. Recent research has found: structural differences in the brains of migraine sufferers and non-migraine sufferers, an autoimmune antibody in POTS patients, and increased sensory nerve fibers in the blood vessels of the hands of fibromyalgia sufferers, to name a few. I’m a huge proponent of therapy and I think it is a good idea for anyone with a chronic illness to get therapy because chronic illnesses can increase stress, anxiety, and depression. But chances are when you say this to someone you are only contributing to their stress, not helping them see something they never saw before. Just because someone suffers from a mental illness in addition to a physical illness does not always mean that one caused the other.

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. Remember- it is not the medication that is making someone sick. Sometimes they have bad side effects- but people only put up with side effects if the medicine makes enough of a difference that the side effects are negligible.

 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:

"I believe you."

You would be surprised just how much that will mean to them.





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