I thought of this entry because as I shared the other day, I recently heard one of my friends ran his mouth saying I pick and choose what I do, I don’t do things anymore not because I am sick, but because I am lazy. HA. I would never ever wish what I am going through on my worst enemy. Until you live a day in my shoes, zip it. I handle a lot, I think anyways. And with a smile to boot!
For myself personally, I don’t care if I am vomiting all over the place, want to cry in pain, feel as high as a kite, can’t feel my leg or feet, or see things that aren’t there, I get up, and go. I need to. For me. I need some sense of independence. It keeps me going. It keeps me from giving up. It gives me a sense of normalcy. I need to work and make money. I need to work to feel sane. I AM NOT LAZY.
I do what I need to and overdo the things I still do and in turn my nights are usually horrible. If you know me personally, you haven’t seen me out dancing, having cocktails, or singing karaoke in a LONG time. Do I miss it… YES.
Is it because I am “lazy”? Absolutely not. I miss my life. I miss going out and doing things. I use to always do things outdoors, like wheeling, target shooting, swimming, and walking my dog. I use to waitress. Now I simply can’t.
That was a huge stab in my back. Don’t ever judge me unless you have lost complete control of your body and your mind and can’t awaken from this horrible nightmare that is Lyme and co-infections. Ever.
I have even heard from a Lymie saying if I am so sick why am I working? She said she couldn’t because she was “way worse”. Listing things off to make sure I know that she is much worse off. I roll my eyes every time, because I don’t sit and compare myself to others. I am me. You are you. I am not going to list of my gigantic list of problems and demean yours.
First of all, everyone is different. Everyone’s symptoms are different. Mentally, people handle things very different than the next person. And how dare a Lymie say such another thing about another? It is not a competition. If it was, you win! I DON’T want to be sick. If you want to be the “sicker” one, than go for it. We are all on the same team here. Advocacy. Awareness. Healing together and providing hope to one another.
It drives me insane that many of us seem to attack each other. We fight so hard to get people to listen to us and get the CDC and IDSA to believe in chronic Lyme, but it is difficult when it seems like we are not united like we should be. We all need to be together in this. Being different from one another does not mean that we are not alike. We all have a common cause even though our stories can be much different from each other.
Some might not be able to work or do anything because they can’t move or literally get out of bed. Some need more help than others. Some can no longer drive and don’t have a good support system. Some are just plain much sicker than others. Some people might look completely normal to the person next to them, but they are completely suffering on the inside.
Never judge another person’s journey. Whether it is in sickness, or in life. You just don’t know unless you are that person. It is unfair, and it is not right.
So the first comment is what set me off and brought me to the idea on doing a post on things not to say to someone with chronic illness. It reminded me of every little thing that someone has said to piss me off or annoy be during the course of being sick. It could apply to any illness really.
I hate it when people assume that Lyme is just some occasional joint pain. That is one of the reasons why I share my story. I hope to educate others about this disease and maybe they will learn the complexity of this disease.
Invisible illnesses can be extremely difficult because they are much harder for people to understand. Lupus, Crohn’s, Fibromyalgia, personality disorders… there are so many that people suffer in silence.
My illness has been somewhat different though, as my illness for the most part has been anything but invisible. For awhile, back in winter and spring of earlier this year, I not only had my gallbladder out, I had pancreatitis for 5 months, hepatitis of an unknown origin (likely drug induced), ferritin levels off the chart, and just about anything was coming back with an issue on my bloodwork from a blood clotting disorder, to mycoplasma, to nutritional deficiencies, to heavy metal toxicity. I was a wreck. My tics were entirely worse. I had a lot of seizures. If I was well enough to really get around, I walked like I shit my pants. My weight was down to 105 pounds. I LOOKED sick. Everyone knew there was something wrong with me. No doubt about it.
And there will be comments. It is inevitable. Whether to your face or behind your back. That is life. But what do we find OFFENSIVE in conversation? Or just plain ANNOYING?
I saw a few entries from others but would like to incorporate it with my own thoughts and feelings. The other entries were great! And of course I will site them so you can check out the links for yourself. Please add my list of your “peeves” if you would like! 🙂 Sometimes it is good to vent.
Well, you could tell my above things were two things I was upset. They were just plain mean. Intentionally mean. I don’t do mean. I don’t like mean. I think people that are intentionally mean are really unhappy people themselves. Therefore, they feel the need to say stupid things and feed off of negative energy to make themselves feel better. Off my chest. Phew. Once again, roar. Other things not to say to someone with a chronic illness:
To me, the greatest one is, “But you look great!” – I have gotten this a lot since I have put a lot of the weight I had lost back on. I no longer look like I am on the brink of death. Once some issues I was having were addressed, I had more color in my face. I just look better, healthier.
But there are MANY of you that don’t look or have never looked sick at all. Doesn’t mean you aren’t suffering inside, hating every little bit of what you are going through. I think when people say this, they are trying to make you feel better, but in turn, I take it as minimizing how you are feeling. If you look good, you must FEEL good too, right?!
“I get tired too. Especially when the weather is like this.” – Ugh! No.. you don’t understand. Don’t try that empathy bullshit with me. Almost all Lyme patients have a sleep disorder of one form of another. Many of us either don’t or have a hard time getting to the non-REM level of sleep, the level that makes you and your body feel rejuvinated and restored, compared to a healthy person.
The same goes for the “I get achy too, especially with this weather” -No.. you don’t. Empathy with good intentions once again. Gosh, it is always the weather! But you really have no idea unless you are suffering from a debilitating disease. So once again, stop it. Or I will waddle my Lyme riddled ass over to you and punch you in the face.
“How are you feeling, how are you feeling, how are you feeling!!!????” – Ok now, STOP IT. It is annoying. Sometimes we don’t like to talk about how we are doing constantly. A chronic disease is CHRONIC for a reason. Chronic Illness = persistent for a long time, or constantly reoccurring. You’re answer is probably always going to be the same. “Okay”. “Sore and tired”. “Miserable”. When people phrase it right like they often do with myself, “How’s it going?!” My answer is always the same. “It’s going.”
I want to hear about your day is going. What is new with you. The latest gossip. I don’t want to sit and talk about how I feel. I want to forget about it for at least a little while, as it has consumed my life.
“Well if you do this, then you will get better!” -Your remedies on how to make me feel better, like it is an easy fix. CHRONIC. Not an easy fix. And no, you are not my fucking doctor, you can shut your mouth now. Unless I ask you for doctorly advise, keep it to yourself. I have a bunch of antibiotics, supplements, etc. that I take. I don’t need your additional two cents. I trust my amazing, knowledgable naturopath, and one of the world’s leading Lyme doctors. Thanks but no thanks.
“So and so has Lyme (or whatever chronic illness) too, and he/she acts fine. He/she did this and they are all better!” – Kind of goes along with my doctor pet peeve. Well, good for them. Everyone is different. What worked for John and Jane Doe, the person down the street, your second cousin, your dog, is going to be different than me. I obviously have no control over my brain causing me to do what it does. Or my organs. Or my joints.
“Call me if I can do anything to help!” – I am not going to call you. I don’t really want you doing things for me. Also, that is like one of those annoying empty things to say, because if you really wanted to help, you would just help.
If you really want to help, show up like my best friends and take me out of the house to do something simple. Do something specific. Bring me something that you know I can’t get myself, like cookies for Dave, apples, or a pumpkin for my front steps. Drop off dinner. Dinner that I can eat of course! LOL Grab me a coffee because you know I am feeling terrible and don’t want to drive the two minutes down the road to get one. Just come over and start cleaning. I always tell my friend who cleans to stop, but I know at nearly 6 feet tall ( I am 5’4″), she could stomp me to the ground. In turn, I get my dishes done, my house swept and vacuumed. A little less stress. Some people I just don’t want cleaning my house though. So just don’t. If you have doubts, you probably aren’t one of those people. Lucky for those people, you don’t get the pleasure of sorting Dave and I’s undies.
“I wish I had the time to relax like you do and have more free time..” Umm what? I am not relaxed. I am stressed out of my mind, scared, hurting inside and out. I do what I can for work, then I sit on the couch. Missing life. It has been over a year since my treatment. And I have spent the majority of it on my couch. Or in bed. I don’t get out much and do anything. My close friends have been more than accommodating and doing things that they know I can participate in, like going to dinner. A bon fire which involves sitting. A movie. Even sometimes though, we have to make it right in town, and we generally play it by year, in case I am not up to even getting dinner or anything, really.
“You are having a good day! You must be getting all better!” – People with chronic illness have good days and bad. It by no means that we are all better. Just because I could go to the pharmacy, the bank and the post office after I go to work, does not mean I am healed. I always pay for it afterward, but I still do it! Sometimes I also don’t look like complete dog doo. If I am feeling okay, I will wash my hair and go the extra few steps. Take more time to take care of myself. So of course I am going to look better.
For me, my good days are not becoming necessarily more frequent, but when I have them, they are MUCH better than they use to be. I use to have some sort of functionality, best from 10-1. Now I function best from 10 to 2, rest, then can do a little more from around 4-6. That is huge for me. I can cook dinner. I can sweep and vacuum, if I am not taking a longer nap. But I am literally jumping for joy over the simple milestones.
That is another thing. When I am proud of a minuscule accomplishment, be proud with me, even though it sounds completely stupid. I made it through the airport without a wheelchair. That is amazing to me. I almost cried once I got home as I realized that I have come such a long way to make that milestone. It may sound stupid but it is a huge deal to me. Do not ruin it by telling me how you are doing something simply amazing, that I could not even remotely do. Or how you got a good deal on a pair of jeans.
“It should be fine if you go and do this with us!” – No.. it probably won’t be. I know what I can and can’t do. It is great to have an offer to go out and do something, but if you know I can’t go out dancing, then don’t ask. It makes me sad. If you really want to hang out, then come see me. We can sit and watch a movie together. To me, it is an empty invite.
It is also annoying if I do go out and do anything, acting like I am all better. I went out for an hour. Whoopedy doo. I spent the next two days getting well because I feel terrible afterward. But sometimes it is worth it with the right people.
An example is going to a restaurant with some friends that I wanted to really see a few towns over. I hardly ever leave town. Dave obviously drove. I had a seizure in the parking lot, again once I got home, and slept for 14 hours straight, and woke up feeling like I was hit by a train and like I had never went to sleep. It was just too much for me that day.
This annoyance also applies to things like overstaying your welcome. Unless you are my best friend that I don’t feel like I have to entertain, don’t. Sometimes I just want to be left alone. No one wants to have company when they feel like they are on the brink of death. They want peace and quiet. If you can see I am having a hard time, go home. I never know how I am going to be doing two days from now, so it is best to check. And please be understanding if I cancel plans last minute. It is not you. It is sometimes just exhausting having company.
Not trying to be a double standard in the means of canceling plans, at least for me I ALWAYS let a person know beforehand how I think I am going to do and if I might not be able to make it, but don’t say you are going to come over if you don’t plan on showing up. That is an asshole move. For someone sick or healthy.
For those of us on the couch and someone offers company and we are well enough for company, then come! Doing absolutely nothing makes you really look forward to the little things, and it is crushing when you look at the clock and no call, no text, no show because you found something more “fun” to do. It has happened to me. I bet it has happened to you.
“It could be worse!” – Yes, it could. It could always be worse. But you just told me what is going on with me isn’t really all that bad, right? After all, “it could be worse!” For Lymies, I have gotten the comment that drives me insane.. “At least it’s not cancer!”. Yes. Cancer is terrible. But in my defense I will say, cancer is a recognizable disease, and everyone agrees upon it. Treatment is pretty cut and dry for options to be used to heal. For Lyme disease, there is so many disagreements about treatment, many are left without a doctor that is willing to treat them, and so many doctors are not treating the patients in a way that will be effective for the patient. Many do not realize the severity that Lyme and co infections can actually be, and yes, they can be deadly.
I should note that a lot of what I have said IS in fact, with good intentions. But those words coming out of your mouth most of the time make me feel like what I am going through really isn’t all that bad. You have no idea what I am going through. And I don’t know what you are going through. Plain and simple.
“It is all in your head.” – The annoyances and wrong things to say from your doctor. This is the worst thing to hear from your doctor. If you have a controversial illness, like Lyme, or they just can’t figure out what is wrong with you, it is in your head. You are depressed. You have anxiety. You have fibromyalgia ( I am convinced fibromyalgia IS Lyme disease.. another post for the fibro forums one day..). Some of you have been to dozens of doctors to finally get someone to listen and believe you, that is is indeed NOT in your head.
Other than being misdiagnosed with other ailments, I have been told my the medical community that “I am doing this for attention” . A nurse told my husband this when he told her I have Lyme as he brought me into the hospital from a really bad seizure. Trust me, I could get attention in a lot better ways than having a chest port that in turn I have not taken a shower like the rest of the world for OVER A YEAR. Not my cup of tea. A low cut top with a push up bra would have been the easier choice for some attention. haha.
Getting treated like a drug addict. Once I said my list of medications at the hospital, I was treated like an addict. I use to not as much as take a Tylenol. I don’t like pills. But I need them to control my seizures and tics. I take my dozens upon dozens of pills and IVs every day to keep my immune system going, to keep me from having constant seizures, to try to control my verbal and physical tics, to help my heart beat normally, to sleep, to kill Lyme and co-infections to reach a level of remission one day. I am not a drug addict.
My last one that really bothers the crap out of me that many do… LYMES disease. You have no right to talk about LYME disease if you do not even know how to say it right.
This is my negative nancy post. LOL I just needed a vent session. As I am writing this, as you can tell, I am not so positive. No butterflies, rainbows, and unicorns today. Sorry folks. I still love all my readers, though!
I will do a follow up on positive things that we will appreciate and the right things to say will follow sooner or later, if my brain fogged mind reminds me to 🙂 . And what we can do to help ourselves deal with having a chronic illness.
Some great links below, I will also probably incorporate some of this info into my other future postings 😉
http://invisibleillnessweek.com/2009/06/19/20-things-not-to-say-to-an-ill-person/http://www.anapsid.org/cnd/coping/looksick.html, http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html?_r=2&,http://www.focusonthefamily.com/lifechallenges/emotional_health/living_with_chronic_pain_and_illness/ministering_effectively_to_the_chronically_ill.aspx,http://www.thefreedictionary.com/chronic << I can’t remember or find the right words now… yay!