A few years ago, I got what I thought was food poisoning. I'd never taken any days off work, I worked 50 hour work weeks while also operating my own business on the weekends. I was busy all the time, and so, it was under much duress that I actually used my sick days to recover...except I never recovered. In the months following I kept getting sick and kept having to take days off to the point where I had to quit due to my symptoms and the stress of my two jobs. What followed were rounds and rounds of multiple doctors and testing because I would get sick and then feel perfectly fine, and be sent off on my way, only to have to come back again for more testing when I was sick again.
My symptoms were all over the place from what I thought was food poisoning symptoms initially, to hair loss, to severe joint pain, to fevers, to extreme exhaustion, to internal bleeding. Finally I got the diagnosis that I had Crohn's Disease. Day one I was handed a pill bottle with no joke, 270 pills to last the month with a year long subscription after that. I went from a pill free life to having to take 9 pills...a day which had their share of terrible and embarrassing side effects on top of the ones I was already experiencing form the disease itself.
If you want to know more about Crohns specifically, see: https://www.mayoclinic.org/diseases-conditions/crohns-disease/basics/symptoms/con-20032061
I know so many people are well intentioned when they set out to deal with or help someone who is dealing with a life long illness or disease. These things don't just effect the person who has it, but everyone around them as these aren't things that are just going to go away in a month with a set of meds, but rather they can be frequently debilitating, lead the person to have to go to emergency rooms on frequent basis, they are life times of doctors visits and copious medications, dealing with insurance, and good, bad, and really ugly days. Most of us know, in good faith most people have a good heart, but there are just some things that after hearing them a million times, kind of begin to bug you especially when they come from people who know about your disease.
1. You don't look sick
Sometimes I think I should take this as a compliment, but at the same time, it's essentially saying since you don't look sick, you must not be because every illness can be seen by the naked eye, right? I know this is what a lot of people with PTSD go through when no one believes them because they can't physically see the pain or trauma the person is going through. I try my best even in my worst times to be as peppy as I can for the sake of others, but when I'm truly feeling sick, I let people know so they don't mistake my feelings for anything but me just trying to deal with the day to day, but it doesn't help when people actively don't believe you and try to say, well, you're just fine because they can't see it, when you're most definitely not.
2."I know" how your illness works
Unless you personally have the same disease or illness, you don't know. And even then, every person is very different and disease effects people very differently. Some people can have major symptoms and be bed ridden, others can be walking around seemingly just fine, and then there is everyone in between. Also medications do not work the same for everybody. If something worked for your cousin, it may not work for you, so telling a sick person, you know such and such should work because it worked for someone else, is not the best idea. It also can really make that person feel worse because it's like, well, then why isn't it working for them.
3. It could always be worse
If I had a dime for every time this has been said to me, even literally at the moment of my diagnosis by family members who didn't even believe I was as sick as I was despite the mountain of evidence to the fact. There will always be someone in the world whom someone else thinks has it worse than you no matter what you have. In fact, though it's been centuries, no one has actually ever identified that one person who apparently has "the right to complain." As the person who is sick, you are having to deal with the feeling of being sick and if you feel crappy, if you can't get out of bed, if you wish you could be outside with friends and family instead of in your crappy situation, that's how you feel and if the situation were reversed, perhaps everyone else would get that, but it's not, so all us sickies ask is that you bring the focus to the situation and the person in front of you and don't just dismiss that persons feelings or pain. No need to pity, just try and support them in that moment and be present for them and acknowledge their feelings at that moment because you don't know the level of pain they are experiencing and how it is actually effecting them. For them, that is the worst.
4. If I were you, I'd handle it this way
But you don't, and you're not us, and these are things you can't know or fully understand like say a pregnancy until you personally go through it. Everyone has advice. EV-ER-Y-ONE, on how you "should" handle your life, but rather then resort to some hypothetical, which believe me, we wish you never have to find out, try to refrain from the, "if it were me, I would," statements.
5. You're much too young to be in bed/feel sick/you're faking it
I got this a lot early on as if disease only ever happens to the elderly. There were and still are many days I'm stuck in bed, and family told me I should be up and outside and not in bed "wasting the day" or sleeping all the time. This was after repeatedly telling them it was because of the illness which many did not believe even though I was never the type of kid or adult to lie about being sick. Chronic illness can affect anyone at any age. Especially if you know the person has been diagnosed, they aren't faking it, they want to feel good and to feel better, not remain sick all the time.
6. Just Be Positive
I want you to think about that one moment in your life when you were truly sick, when you were in the weeds, when you had that epic fever or food poisoning or broke several bones, whatever it was..when you were in your worst pain, were you...smiling, upbeat and walking around, cheerful, super pleasant, laughing hysterically. I venture to say you absolutely were not. Chronic disease means you have it for life, you will have several years if you live that long of illness and pain and having to go to doctors when you'd rather not...FOR LIFE...there will be many a day when you just physically do not have anything left to be positive. Being positive helps in the sense that you can't let the disease overtake your life to the point where you become bitter and angry all the time about it, but when someone is telling you they just don't feel good and want a little support, love, or someone to just listen, just do that for them rather then try to be some pep rally cheerleader in their true moments of pain or physical and/or mental weakness. They actually do need a break from trying to be so positive for everyone else's sake all the time.
7. Why can't you just eat normally?
I have had to give up a lot of foods that make my symptoms worse. I have told friends and family this, some have even been to doctors appointments with me when my diet was discussed, and still when we go out to eat or food is being cooked and I mention some things or I refrain from eating certain foods, people throw a fit. I've been accused of being a picky eater, or being disrespectful to the cook, of being on a wacky diet or starving myself...you name it. It is extremely hurtful because the changes I've HAD TO make to my diet are so that I can feel as good as I can and not exacerbate my symptoms. It's one thing if you don't know, but it's another when you do and still make such comments. Someone with chronic illness may have to make all sorts of life changes that they themselves find unpleasant and hard to comprehend, so try your best not to give them a hard time about it because they are already probably struggling to deal with it on their own.
8. Are you still...sick?
What part of chronic illness was unclear, lol! I hate being sick, I hate when everything in my body hurts and I just want to be out with everyone else, but I have zero control over that. I take my meds, I eat as healthy as I can, I workout on a regular basis, but sometimes even with all of that, I still get sick and sick repeatedly. When you know someone is going through that, try your best not to make it about you as if they are avoiding you or not wanting to hang out with you, because believe me, if they were feeling better they'd rather be no other place than in your company. Maybe just try and come over and give them your ear and support them.
9. Let me know if I can help
This is again, so well intentioned to say this to someone who is sick, but it's basically the equivalent of "we should do coffee sometime." It never tends to really go anywhere. Try and ask specifically what you can do for them to help. If they have no answer, than it is what it is, no need to insist, but they may ask if you can get grocery for them or watch their dog, or what have you that would be really helpful and they'd certainly really appreciate real help when in a bad way.
10. You've been in remission for a while now, so you're cured right?
Might as well call remission intermission for most people with chronic illness. I've been lulled into this false feeling of joy that I haven't been sick in a while only to of course, then get sick again and have all those terrible feelings about my disease come flooding back to me in technicolor. Again, chronic illness doesn't tend to just go away otherwise they wouldn't call it chronic. And the whole, why are you doing this to us or it's probably something you did that triggered it to come back or it was the food you ate or the you didn't take your meds right as explanations people tend to try to force upon people who's remissions end, are just about the worst things you can say. WE obviously more than anything wan to be and feel healthy. We do everything we can to stay that way, so it is incredibly heart breaking when our disease, despite our best efforts, comes roaring back. Don't blame the sufferer, don't try to fault them, just do what we'd hope you'd do, and offer up your love and support.
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