Chronic Diva

We all know someone with a chronic illness (or multiple). If you know me, you know someone with multiple chronic illnesses. What you may not know is that sometimes, in casual conversations, you may unwittingly say things that invalidate our illness and as collateral damage, our feelings along with it.

I believe it’s the responsibility of the collective whole to be responsible/accountable for their words. Saying “I didn’t know,” is no longer enough and if we shared this information with you, it is, even more, your responsibility to be aware of your words. There will be those out there who will argue with me and say it’s just words. Or they will say that perhaps we should have thicker skin and not take things so seriously. But words have an impact and everyone is fighting a war that others can’t see. 

• It could be worse, right? Why yes, it could. But this is my life right now and I’m struggling with it. Sure, Sam over there might have it tons worse, but I’m not living his life and he isn’t living mine. What you can say instead: I’m listening to how you feel and how difficult things are for you. Is there a way I can help? 
• C’mon, smile. If I had a penny…This, to me, reduces all my problems with my ability to smile. I get that smiling may help with my mood, but it’s temporary. My smiling also helps you to feel better and ignore my problems that may be glaring before you. If I smile things can’t be so bad. What you can say instead: I know it’s difficult to smile right now. And you don’t have to. Maybe we can take your mind off things- how can I help? 

• But you don’t look sick. Every time I hear this, I mentally strangle the person. It just irks my brain that for my illness to be real, I need to look sick. There are many, many illnesses for which there is no obvious “tell.” This isn’t like the flu where you are going to have symptoms like coughing and sneezing. Even with cancer, until you actually begin going through therapy you don’t have visible symptoms. I could stand 20 people in a row with about 80% of them having a chronic illness and they wouldn’t look any different than the 20% who are perfectly healthy. Appearances aren’t everything. Keep in mind many of us have mastered the plastered smile, have perfected the ability to appear healthy because our jobs depend on it. People with chronic illness are some of the toughest I have ever met. What you can say instead: Wow, you look great today even though I know you aren’t feeling well. It always boosts our morale when someone notices the length, we go to feel normal.
• Have you tried __________? This one is tricky. There are some legitimately excellent ideas people have given me that help with certain symptoms. On the other hand, there are some ideas that people have offered that are completely off the wall. We’re talking about strange, miracle cures to these health diets where you only eat avocados for 2 weeks. There’s also been spiritual advice which has ranged from, give your troubles over to Jesus, to needing someone to cleanse my soul with sage. I understand people wanting to offer advice; things that worked for them, but 1.) What worked for you may not work for me. Individuality is important to remember. 2.) You are assuming I haven’t already tried it (everything). When you are chronically ill/ or in pain you go through extraordinary lengths to feel better. 3.) I may not be religious or spiritual. Some don’t want that kind of advice. So, instead of asking Have, you tried _____? Try instead: I know you’ve already tried many things to feel better, I’m sorry it hasn’t helped. Is there anything I can do for you?

• Why are you on disability? You don’t look sick. Here we go again. Just because we don’t look sick, doesn’t mean we aren’t. Not everything is visible to the naked eye and not everyone is trying to game the system. There are many disabilities that you can’t see, including mental illness which does qualify for disability. You also have PTSD; which you can’t see all the time and you may not know what triggers a person. So, Next time you are out and see someone who gets out of a vehicle parked in a disabled spot, who doesn’t appear disabled, think twice about saying something as they may have a disability you can’t see. Instead try saying: Nothing. Because it really isn’t any of your business and the simple act of asking may trigger someone. Getting disability is difficult. It really is something you earn because you have to fight so hard for it. Just don’t ask. 
• Push through it. We all have our burdens. I struggled with this one. Another not-so-easy sentiment that is often hurled at patients/people with chronic pain/illness. On one hand we do “push through it,” every day by just getting up and living each day. By raising our kids, going to work, doing the chores, making sure there is a hot meal at the end of the day, going to school, shuttling kids back and forth to where they need to be, by staying at work those extra 2 hours because you were needed- all of this is pushing through because most days are a struggle to get out of bed. And yet, we manage. However, if someone struggles to do these things, or can’t, it doesn’t mean they should just push through it, or even be assumed that they can. These people are legitimately sick and struggling. You wouldn’t tell someone who has a broken leg to just “push through the marathon,” and make it to the end. Or, someone who has pneumonia to “push through it” and go to work. These are things that need care and time to heal. But chronic illness will never get better. What you should say instead: I am sorry you are going through this. I can’t imagine how difficult it is and, I’m here to listen when you need.

• You should try and get off meds. It can’t be good for you. What about long-term? First, get your nose out of my business. Second, I think most of us would be medication free if we could. And third, I have legitimate things wrong with me that require medication. It would be nice to think fresh air and sunshine would be enough to make me feel better and cure me of my ailments, but it just won’t. This may sound harsh but, (I think many in the chronic illness community would agree) too many people are concerned about the business that is not theirs. This is my body and I have to try and make the best decisions for it as I can. What you can say instead: It has to be difficult taking all those meds just to try and feel a little better. I wish there was more they could do. 

• You’re so lucky you get to stay home! I’d get so much done if I stayed home. Let’s get something straight, I’m not on vacation; I’m not staying home so I can clean closets or Marie Kondo my house. I’m home because my chronic illness and pain are so debilitating that I can’t work a regular job. I’m home because more times than not, I’m feeling like crap and the very act of getting out of bed takes everything- all my will power to do. I’m not lucky. I have a lot of guilt about staying at home and not being able to help financially in my household. It would really have made a difference if I’d had a job. So, instead of saying this, maybe try this: It must be difficult staying at home. You must miss that life. Do you want to talk about it? 

• Aren’t you too young to be this sick? This is universally a stupid question. People can become sick at any age or suffer an accident that leaves them in chronic, intractable pain. Age is irrelevant and shouldn’t be the focal point. Instead, try saying this instead: It can’t be easy trying to manage your illness and all your responsibilities so young. 

• OMG! I get so tired too. (OR) I worked so much this week; I’m totally fatigued. (OR my fave) You’re too young to be so tired all the time. Okay, vocabulary lesson here. Tired: in need of sleep or rest; weary. Fatigue: extreme tiredness resulting from mental or physical exertion or illness. That really is the key difference between the two words when you are speaking to someone with chronic illness. The tired we experience isn’t the same kind of tiredness you feel after a long day’s work, or after a really intense yoga session. This is the kind of tired you can’t shake even after 12hrs sleep. Even if you caught a nap, it’s a bone-weary tired that you feel all day, sometimes every day and makes accomplishing even the simplest chore, gruelling. Now, being too young? I can’t tell you how annoying this is. People can’t understand why a young person in their 20’s suffers from fatigue because of their chronic illness, or as in CFS (chronic fatigue syndrome aka ME or myalgic encephalomyelitis) is the primary symptom. They can’t understand why a shower is so taxing that a nap is required after to rejuvenate. They assume, wrongly, that they are just being dramatic. Fatigue is a very real thing and it doesn’t obey any kind of age rules. You can suffer from it at 20 or 60. I have 20 something children who suffer from chronic illness and fatigue is a real thing. When I hear people saying damn, lazy millennials, it really ticks me off. What you should say instead: Fatigue is a real thing. You need to take time out and take care of you. If you need any help, let me know. 

• You need to try yoga. (RME) Or, you need to exercise more. Sometimes, I don’t have words y’all. I have to bite back some well-chosen profanities too. Yoga, while an excellent form of exercise that is low impact and you can modify it for all levels (I was a yoga instructor before my body fell apart and still practice it, though not as much as I should) isn’t a cure-all and shouldn’t be touted as one either. Some people may obtain benefits from yoga, while others may end up needing a week to recuperate, no matter how you modify it. I get the enthusiasm. Maybe it helped you and you want to share it, but everyone is different, with different limitations and abilities and endurance. It may also be that their type of chronic illness or pain levels may be such that it would hurt them more than it would help them. Sometimes I go for months without doing yoga because my body just says “Nope. Not today.” And that is okay. I do what I can when I can. As for exercising more? Same thing. People have to find something right for them if they choose to do it at all. And others may not be able to do any exercise and that is okay. Meditation is really a great alternative, but again, it’s not a cure-all. Instead offer ways they might be able to: sit outside and enjoy the sunshine when they can. Sunshine can be a really great way to shift mood and you only need 15 minutes a day. But I would avoid mentioning exercise at all. 

• Naps?! You’re so lucky. This isn’t an “I’ve had too much to eat, I need a nap” sort of thing. It’s also not a “Lazy raining, Sunday” type of thing. These naps are a necessity. If you don’t take these naps you literally can’t function. Sometimes, like for me, napping is cyclical. I’ve never been a napper and even stressed out and completely fatigued, I’ll be wide awake. It’s partly due to my bipolar and bouts of mania, but it’s also just me. So, when I do nap I know my body is having a rough time. Instead, say something like: It must be rough having to take time out of your day to nap. (OR) Napping is necessary when you are struggling with chronic illness. I’m glad you can take some time to sleep. 

• Think Positive Oy. I get people wanting to be positive. I even get people wanting to encourage other people to be positive. I do it. Positivity and having that kind of mind frame can be beneficial to your overall mindset and health. However, having a chronic illness is difficult. If someone is not smiling 24/7 there could be many reasons. The permanency of chronic illness is not something you ever get used to. While it may have been something that began gradually, it feels like you woke up one day never to feel well again. Think about that. Having the flu forever? Sucks right? No one wants to be ill or in permanent, intractable pain. We want to feel good. We want to do everything we did before we got sick. We want to be healthy and pain-free. Instead: Maybe talk to them. Have them tell you what is going on in their lives. How they are handling their chronic illness. If they are truly depressed, they might benefit from talking to a professional about their chronic illness. 

• Be patient, it will get better. This goes along with “Think Positive.” People seem to forget the chronic; in “chronic illness”. It doesn’t get better. In fact, it’s likely to get worse. This isn’t something where you can convalesce for a few weeks and be as good as new. And the truth is, we’re probably more patient than many out there because we have to be patient for so many things. Patient in doctor’s offices, patient while waiting for a diagnosis (sometimes it takes years to get a diagnosis), and patient with family friends who don’t believe us. What you should say instead? It’s difficult being patient all the time for so long. I’m sorry you have to struggle with this.

• If you’re still doing ________, you should stop. Look, if you smoke and have asthma, sure. You should probably stop smoking. I mean really think about it and stop. If you’re going through a 12-pack of Coke every few days and you are a diabetic, you should probably stop. However, not everything has a direct correlation with a person’s chronic illness or pain. Telling a person o cut down their soda consumption will probably not affect their Lupus or R.A. Telling someone they should curtail their alcohol use, while probably overall a healthy idea, will probably not do anything to change the outcome of someone with degenerative disc disease. Truthfully, in all these examples the person is the one in control of their body and it’s their choice of what they want to do. Instead of saying this, my advice would be to: simply encourage a healthy lifestyle. That benefits everyone, without sounding judgmental over a person’s life choices. When you target bad habits (or what you may perceive as bad habits) you only alienate that individual and they are likely to continue what they are doing out of spite. 

You have anxiety, see a therapist. While seeing a therapist may be beneficial for many, if you don’t know the nature of someone’s anxiety you can’t just tell them to see a therapist as though that will be the magical fix. Some have seen a therapist and have had a bad experience. Other’s may benefit from things like meditation instead of therapy or other, anxiety-relieving techniques. Some people may not have the insurance to be able to afford therapy which could be quite expensive. My advice: Just don’t tell someone they need to see a therapist unless you truly know their issues surrounding their anxiety. 

I hope you feel better soon. -facepalm- Say this with me, “chronic” illness. Again, sarcasm aside, chronic is the keyword here. Chronic as defined in the dictionary: (adj.) (of an illness) persisting for a long time or constantly recurring. (Also) (of a problem) long-lasting and difficult to eradicate. You may have days where you feel pretty good, but it isn’t a permanent state. Instead of saying this, try something like: I can’t understand exactly how you are feeling. I do know it has to be difficult dealing with something long-term like you are and if there is anything I can do to help, tell me. 

Everyone has limitations. This one is just yours. There are so many things wrong with this one I just don’t know where to begin. It makes it sound like you should be able to put it to the side and carry on as usual. Chronic illness isn’t something you can put in a box and just ignore. The symptoms can be all-consuming, felt every day and can make life very difficult. Making it sound like this is just your cross to bear is wrong. As though you need to suffer in silence- it’s just wrong. Instead of this try saying: Nothing. Just avoid it. It’ll be better for you and the person receiving it. If you seriously have to comment on this I would say: I will support you however you need. I know you can do this. 

I have that too (insert chronic illness or symptoms), so, I understand. (Or) I have _____ too, but it doesn’t affect me as it does you. Maybe you’re on the wrong meds. I am not you and you are not me. that’s a glorious thing. We’re individuals- from the way we think to how our bodies work and respond to medication. So, what works for you may not work for me and vice-versa. You can’t compare your experience with chronic illness to anyone else’s. Others may have the same symptoms but their experience and how it affects them may be quite different. Instead try saying: I’m sorry you are struggling with _____. I may have the same thing but I know it can affect others differently. Do you want to talk about it? 

Do you really need that disability placard? (Or license plate) oy… Yes, actually I do. And yes, there are thousands, if not millions of people with unseen disabilities, that need a disability placard. There are so many disabilities that are not visible to the naked eye. People who suffer from PTSD who need to get in and out of the store quickly to avoid a trigger. People with severe anxiety who need it for the same reason. There are others with chronic illnesses which find walking a great distance exhausting. There are many reasons why people may need a disability placard or license plate, not just because you have a physical disability. Instead, try saying this: Nothing. No one should be judged for having this placard. It’s not easy to acquire so you should keep the judgment to yourself.