Being sick sucks.
Being ANY kind of sick sucks. No matter the severity, the symptoms, the medications or remedies - all illness sucks.
So when someone - someone you know or someone you don't know - says or asks something that is offensive, glib, sarcastic, or judgmental about what we are dealing with, it makes it THAT much harder. Keep in mind that every single person with any chronic illness has felt guilty in more ways than one. Guilty wondering if anything was self-inflicted, guilty for having to cancel on plans, guilty for taking sick days, guilty for being unreliable with social or work schedules because of the unpredictability of the illness(es), guilty for asking for or needing help, guilty for causing unnecessary stress or worry, guilty for being distracted... There is so much guilt associated with chronic illness that, believe me, I (for one) do not need ANY help from others to make me feel worse.
Here are ten examples of comments or questions that do not help.
1. "Wow! You don't look sick at all!"
No. I don't.
That is because the inflammation and pain is internal. It is also because I use this amazing invention called makeup. I don't know one person who WANTS people to see them when they are sick. When you have maybe had too much alcohol and are puking your guts out, would you someone to take pictures and video and want the whole world to see? If you have the flu and you are extremely weak and pale and are running back and forth to the washroom, would you go out in public? Would you invite friends over and have a dinner party while you carry around a puke bucket with sweat-streaked hair and sweatpants? Would you really want everyone to see you in that state? I know that I don't. I like to puke in private. I like to try and make myself look normal so that I can simply go about my day. Commenting on the fact that I don't look sick and insinuating that, because of that, I must not BE sick is absurd. It is hurtful.
2. "You don't work? Geez that must be nice!!"
It's not.
It sucks.
Of course, there are some benefits, but TRUST ME when I say that the downfalls outweigh the benefits by a landslide. I would much rather be working. I would not wish any of this on anyone. Not any of this pain, any of this nausea, any of this medication or weakness or unpredictability or inflammation or total physical, mental, and emotional abuse from my own body.
I can't even shower without vomiting. Daily menial tasks are pretty unbearable. I would much rather work 80 hours a week than be severely limited by my own body.
3. "Seriously? You can sing/perform but you can't work?"
Yes, seriously.
I sing/perform maaaaaaybe once a month. For each performance I take double the pain medication, double the anti-nauseates, and then after that performance (as small as twenty minutes, without hauling any equipment myself), I sleep through days. DAYS! Sometimes it's only one or two days but is has been as many as 5. Not just resting in front of the tv - sleeping. Not only that, but the recuperating time after one performance lasts weeks. My energy levels are completely depleted, I end up vomiting more, and I often need help around the house and to take my dog out for me. So yes - I am capable of singing once a month. But that's it. And if I am particularly busy with appointments, once a month is pushing the envelope and sometimes I have to cancel or slow down because my body gets too overwhelmed.
4. "Have you tried the _____ diet?"
Yes.
I have tried every single diet that a doctor, nutritionist, naturopath, or qualified health professional has suggested. I do not EVER cheat on these diets. (Seems unlikely, but I have had MANY years of practicing discipline when it comes to medications and food). I know what the consequences are for not strictly following a regimen - and one indulgence is not worth the pain. Every diet is given a three month trial, if not longer.
5. "If you had just seen ____ kind of doctor, he/she could have helped you and prevented you from getting so sick!"
Thanks...?
First of all - not true. There are major flaws in my genetic makeup and immune system - there is nothing that I could have done in order to prevent these illnesses. Even if I had been put on these current medications as a young girl, it may have slowed down the process, but all of this illness only needed one trigger. And really - how on earth is the above comment helpful? Pile on more guilt why dontcha?
6. "I thought I read somewhere that _____ is a cure for the illness?"
No. No. No. And No.
If there is an actual cure for any of the chronic illnesses that I have, I am certain that at least ONE of the 12 specialists that I have been seeing on a regular basis would have mentioned it....
7. "Why did you have to quit doing ____? You were able to do it last year! You seem fine. You're just using your illness as an excuse. I don't see you in a wheelchair or with your guts spilling out, so you are clearly still capable, you just don't want to."
Chances are, if I have to quit an activity, a club, going to the gym, performing specific gigs or genres, I am probably pretty upset about it to begin with. I am an extremely stubborn and independent person. I have likely pushed my body as much as I possibly can. If I have decided to step away from something that I love, you can bet that I have had countless sleepless nights over it, I have cried myself to sleep for feeling like a failure, and I am both angry AND disappointed that I have to 'give up' on a positive part of my life.
I am far from lazy. I'm just sick.
Plus, just because I was able to do something one day does not mean that on any other given day I should be able to do the same task.
On that note, if I ask for any kind of help, a ride to an appointment, or company, I can guarantee that it was my absolute last resort and I am miserable for having to lose some independence.
Oh and as for using it as an excuse? Definitely not. I know better than that. If I - once - ever used my illness as an excuse not to pursue something that I love, then I would lose all credibility. I would also lose all self-respect in that case.
8. "Nice to meet you, I am Doctor _____. I can fix you."
I hate to sound pessimistic or ungrateful, but I have heard dozens and dozens of health professionals (and non-health professionals come to think of it) tell me that they are going to be the ones to fix me. Not to worry - they will take away all of my pain and inflammation and put me into remission and completely turn my life around. By all means - I will give it a go. I promised myself that I would try any logical remedy or treatment for several months before making a decision. There are many therapies that help ease some of the pain for short periods of time, but unless you can truly perform miracles, promising me that I will be cured is insulting.
I have already gone through the five stages of grief over a hundred times from procedures and comments and appointments and surgeries and diagnoses and treatments and misdiagnoses and failed treatments and lost activities etc... Do you have any idea how hard it is to reach 'acceptance'? Do you have any clue how tough it is to reach 'acceptance' several times a year?
If you can't deliver on a promise, or if you're not SURE that you can deliver on a promise, then don't make one - especially if we have only just met and you haven't even seen or heard my medical history yet. If you tell me that you're not sure how much it will help but you will do whatever is in your power in order to help me feel better - then I am on board!
9. "Oh! I know a person who has that. I know exactly what you're going through."
No.
You don't.
You may have an idea, you may have gained some insight, but you do not know exactly what I am dealing with. Just as I do not know exactly what YOU are dealing with. First of all, every single person has a different experience with illnesses. If you took three people with Crohn's Disease, they could present in three completely opposite ways. Secondly, if you do not have the illness yourself, then it is impossible to really understand or empathize. Thirdly, yes, you may know someone with one of the illnesses that I deal with. One. I have a LIST of painful, debilitating, unpredictable, chronic illnesses that all demand attention, that all require very specific therapies, and all have their own list of complications. There is no fathomable way you could completely understand.
10. "I would kill myself if I ever had to deal with _____ or ____. I would rather die than have _____." Or "I would rather die than have to take medication for the rest of my life."
Every single person is entitled to his/her own opinion.
But how on EARTH is this helpful? Obviously I have decided that I want to live. I have decided that I can fight through this and I WANT to fight through this. Coming to the conclusion that I have to take medication for the rest of my life has NOT been easy! Dealing with an ileostomy bag was far from enjoyable. It is saddening to hear that someone would feel so strongly about an illness that he/she would rather cease to exist than to deal with even one of the illnesses that I have.
I want to live.
But the truth is, it CAN be very depressing. It IS extremely painful. It is ALWAYS very difficult. It is often shamefully embarrassing. I have had bouts of depression and I have, at times, had suicidal thoughts. But I do not want to die, no matter how ill I am or how much more ill I become. I still want to fight for life. Making a comment about how life is not even worth living if you're sick is far from helpful. It would be much appreciated if those thoughts remained simply that - thoughts... Inside YOUR head.
An added bonus:
11. "Don't let your illness define you! Don't allow your illness to control who you are and what you do!"
I try my best. Really.
Illness is simply a part of me and a part of my every day life. Just because I have had to quit most activities, stop working, and modify and destress my entire life, doesn't mean that I have submitted to my illness. It means that I have found my limitations and that I would inevitably worsen my physical health by continuing those activities. I am not allowing it to 'dictate' my life - I am trying my best to live an amazing live WITH chronic illness. I am working with it and around it and cooperating with my body as best I can.
No one is perfect. We all make mistakes. Things are said and done that can be offensive but were not intended to be. We cannot all be walking on egg shells just to avoid offending someone. I know that I have made comments or asked questions or made assumptions about someone and have instantly regretted the notion. This is simply a list of statements that are made on a regular basis that make me feel significantly worse. Deep down I know that most people are just trying to be helpful or to understand better... Most.
We are all learning as we go. It's not as if I have already lived a life exactly the same and know what my future holds. There is no manual, no one to turn to, no crystal ball that tells me how I should react or think or feel or what to do next. There is no list of mistakes to avoid. There is no clear cut line depicting where my limitations are - I am living this day to day and I have no concrete evidence of what will improve or worsen my situation. Sometimes I participate in activities or new ventures that create additional pain and suffering, and I am often asked that if it hurts so much, why did I do it in the first place?
Quality of life.
I do not know everything about my illnesses - I never will. But that's okay! I can live day to day with a continually morphing learning curve.
All I ask is that people please have some mercy and think twice - do you really want to specifically go out of your way to make someone feel worse? How would it make you feel if someone did that to you?