By Selfish Mitch
I’m linking to this commercial since they don’t have a share feature, probably because, as I’ve recently found, it’s being flamed on the internet. I’m not the only one that thinks it’s terrible.
It starts out with a young woman staring forlornly in a mirror in a tank top, scratching her red, patchy skin, cancelling plans on the phone and saying, “It’s just my eczema. It’s fine. It’s fine.”
Then we cut to a scene where she’s wearing a long sleeve shirt, maybe in her workplace or a library, itching again, and some dude looks at her with an expression that I read as “WTF,” but could be “Eww…” or “How you doin’, baby?” because I’m pretty bad at guessing what men are thinking. But she once again says, “Eczema, it’s fine.”
Then we transition to a scene at what appears to be an outdoor restaurant, and our sad skin sufferer is bundled up in a jean jacket. This is also where we realize Sis looks like a young Katherine Heigl but prettier (on the outside but I can assume on the inside as well).
Then her friend with a gorgeous complexion sits down at the table wearing a little tank top and asks Itchy Katherine Jr. if she’s hot, and of course we learn that it’s eczema and it’s fine. Of course. Well. The friend is NOT having it. She whips her tablet out before the server can even come by to see if they want wine. (I actually want wine just talking about this, FYI.)
The friend is all hyped about this commercial she saw for “Eczema Exposed,” and suggests that Hurting Heigl has a special kind of inflammatory dermatitis and she should go ask her doctor about this.
The patient in the commercial looks like, “Oh, wow! I’ve never heard of this before! I mean, I have to rearrange my personal life, my wardrobe, the co-workers who are willing to sit next to me, and everything else around this shitty disease, but it never occured to ask my doctor if there were any treatments around. I would have never thought to do any of my own research about my own condition. Thanks, Karen!” (You know that betch is named Karen.)
The complaints that most people have is that it’s annoying, that most people wouldn’t keep saying, “It’s fine (sigh.)” I have a different perspective. I am living with five different chronic illnesses. The ones that really keep me from living the life I’d love to have are Lupus and Rheumatoid Arthritis. There were two days last week that I was essentially bedridden because of the swelling of my joints. Since I’m living this life, I have a different perspective.
I can’t tell you how many well meaning friends have said really stupid shit to me. I’m an intelligent, educated woman and I do research on random subjects for hours because it amuses me, so of course I’m always checking on new research and development relating to what’s going on in my body. I’m 42 years old, and I’ve been living with chronic illness for almost 1/4 of my life, and the thing about chronic illnesses is that there is no cure. There are remissions sometimes, but at this point, there is no cure. Therefore, when someone comes at me to tell me that I should try what their sister’s mom’s best friend’s dog sitter swears by, my gut reaction is to be hurt and a little bit offended. I don’t know everything about autoimmune; far from it, but I have a good grasp on the basics of diagnostic procedures and criteria, medications, and harmful and helpful holistic treatments, etc. The sad reality, though, is that doctors, while knowing 500 times more than what I know,don’t know what causes autoimmune disorders. They don’t even agree on how many different disorders there are, and they know that what works for one patient can send another into a severe flare. It’s just a frustrating situation all around, and as patients, we do a lot of research and trial and error (a shit-ton of error, TBH) both as prescribed by our doctors, and on our own. Telling me that if I just tried probiotics I wouldn’t have this disease feels like you’re directly insulting my intelligence. I know you don’t mean it that way, but I can’t help the way I feel. And it’s not just you. Take your hurtful comment and add it to the ones we regularly receive from everyone else in our lives, and it gets old fast. Do you think that I haven’t done that research? Trust me, Babe, I could talk for over an hour about inflammatory foods, gut health, and give you a pretty well developed outline idea of some of the leading theories.
I also have my team of doctors; most of them specialists, who have completed at least 13 years of post-secondary education and different residencies and fellowships. I may do a great deal of research on my own, but what I know about the scientific aspects of my disorders will never come close what my specialists know. I doubt that the information you’re bringing me, even if it’s from a TV commercial for a new pill from a pharmaceutical company, isn’t going to be new information to me.
I’m fairly certain that at this point, you think I’m overreacting. I shouldn’t have my feelings hurt or be offended by people that are trying to help. If it only happened once in a while, it might not be so annoying. That’s simply not the case.
I’ve had friends tell me that marijuana cures Lupus. It doesn’t, but for some patients it can alleviate some of the symptoms. I’m all for legalization, but it’s not something that has been beneficial to me. Someone else told me that I need to do yoga. This falls under the, “Do you think that I have not tried that?” category. When I’m not in a flare, I actually love working out. It’s excellent therapy for me, mentally and physically. So yes, I’ve tried yoga. I do it on purpose when I’m able.
Another thing I do not require is your essential oils. Listen. I’m happy for you if essential oils work for you. I haven’t found them helpful beyond their pleasing aromas. Lavender smells quite nice and I do find it relaxing. However, I’ve had MLM oil salespeople tell me to ingest different oils or use them transdermally. Oils can actually be quite dangerous if you’re drinking them (yes, even just a drop or two) or letting them be absorbed through your skin, particularly if they have a bad reaction with pharmaceutical medications the patient is taking to literally save her life. Simply reading the pamphlet that came with your Young Living starter kit doesn’t qualify you to prescribe things to anyone.
I can’t believe that I haven’t gotten to multilevel marketing (MLM) friends yet. There are so many people who have told me that their upline’s friend was able to cure her thyroid condition with this miracle Arbonne or It Works! or Isagenix. I promise you…if an actual cure for a chronic disease was discovered, it would not be sold by a multi level marketing company. One of the most promising treatments that has come out recently to treat autoimmune disorders is a biologic, which runs up to $7500 per month. One thing you can take to the bank is that companies who create new, promising, life changing drugs for the chronically ill don’t sell them for $70 a month and make it a part time business opportunity for a soccer mom to reach #fianancialfreedom.
I can say that I personally feel better with the vitamin packets from Le-vel Thrive, but that’s purely anecdotal. Other vitamins, particularly those high in Vitamin C or containing echinacea can be harmful to me. We don’t want to boost an immune system that is actively trying to kill me, thanks.
I had another friend tell me that I just need to get up at the same time every day, no matter how I feel, make my bed, and decide that it’s going to be a good day. Yes, let me give that a go after pain woke up up 8 times last night, my joints in my ankles, feet, and toes are so swollen and painful that I needed my husband to get me out of bed and let me hold on to him while I walked to the bathroom. My #1 concern on days like that should be throw pillows being perfectly placed. I get the power of positive thinking, and I listen to personal development videos and read books about mindset, but that’s not going to cut it with a disease that can make my immune system attack my joints, kidneys, liver, brain, or whatever else it feels like taking out.
I’m in a few facebook groups for people with chronic illnesses. It’s really helpful to have someone to talk to who gets it. We recently had a conversation about different things people have tried to sell us on. We call it “woo,” a general term for anecdotal evidence, old wives’ tales, hearsay, pseudoscience, and just plain crazy. Again, we understand that you mean well, but frankly, do better. Here are some of my favorites from that thread.
- Do you really have a neurological disorder though? Aries tend to get headaches more than the other signs. (No comment necessary.)
- There’s a parasite you can intentionally eat that will remove autoimmune disease. (The fuck?)
- Bathing in malt vinegar once a week will cure celiac. (Again. What the fuck.)
- The pain and muscle fatigue get better if you just push through it. (From a weightlifter friend. Our deep muscle fatigue has a different cause than yours, and requires different treatment. Taking this advice could land us in the hospital.”
- If you accept Jesus into your heart you will be cured. (Funny, because there are lots of Christians, and people of every other faith, who die of chronic illness all the time.) The same person claimed that eating boiled cabbage would cure this patient. (So maybe it’s a combination of cabbage and Jesus? Is there a recipe?)
- Prayer in general. If we are not religious people and you know this, this advice feels more like judgement than anything else.
- Sleeping with onions in your socks. (OK but why?)
- Juice Cleanses! (This can be dangerous for healthy people. It could put us in the hospital too.)
- Reprogramming your brain with positive energy! You can walk on hot coals if you get your mind right! (Some of us can’t walk across carpet.)
- Going gluten free/dairy free/nightshade free/paleo etc. (Again. Works for some, but not for others. This is not really terrible advice, but if you think we haven’t tried it, you’re wrong. I personally do feel much better if I stay gluten free and limit dairy, sugar, and soy. That’s just me though.)
- Just say NO to Big Pharma! All those pills you take are makig you sick! (Listen, we understand as well as anyone, if not better, how deeply problematic the pharmaceutical industry is. However, some of us are only alive because of Western medical science. If there were alternatives that worked as well as our prescriptions do,particularly without the expense and side effects, we’d be all over it.
- You’d feel better if you lost some weight. (Yeah. We know. However, some of us are on medications that make us gain weight but keep us alive. Some of us aren’t ambulatory. Some of us have conditions like PCOS that make losing weight nearly impossible.)
You can see how a constant stream of this could be annoying. Do you know what we’d love to hear though? Here are some ideas.
- “How have you been feeling lately? I’ve been thinking of you.” (I personally think it’s nice when a religious friend says they’ve been praying for me, even though I don’t believe in prayer. If they do, it’s meaningful to them, so I appreciate it. Just don’t try to convert me. Other non-believers can be offended if you know they’re not religious and you bring it up, so it’s probably a good idea to simply ask them if they’re comfortable with you praying for them.
- “Would you mind telling me more about ___________ (their chronic illness)? I feel like a lot of the information I’ve found online is confusing or conflicting.” This can show us that you’ve tried to learn about what we’re going through without trying to push the remedy du jour at us. We’re not going to judge you for saying the information online is confusing or conflicting, especially if we’re dealing with autoimmune disorder, because theories are all over the place.
- “Do you want to come over and watch a movie this weekend at my place? ”
- “I was thinking it might be fun if I brought us some lunch and we hung out at your place and just relaxed.” This is so lovely, really. Having a chronic illness can be really isolating. For me, personally, I am married, have a child, and two businesses. I miss going out and living it up with my friends, and just having that girl time connection or spending time with couples or groups of friends that my husband and I used to hang out with with, but my priorities have to be keeping a roof over my head. Going out on the town sounds fun, but it might be too draining for me right now. It doesn’t mean I don’t miss my friends. I have one girlfriend who invites me over to just hang out with her and her 2 year old daughter. We’ll talk, snack, watch movies, or play on Snapchat making videos with the kiddo. That kind of social interaction charges my batteries instead of draining them.
- “Is there anything I can do to help? Can I bring you dinner one night, take your kids to the community pool when I take mine so you can get a break? Can I drive you to a doctor’s appointment for your next procedure?” Several of us have minor procedures fairly regularly that involve partial anesthesia and we need someone to drive us or we have to suck it up and deal with that 11″ needle in our spine unmedicated. Caveat to this: don’t offer unless you’re willing to do the thing and you actually want to. We don’t want you to resent us, and it’s perfectly OK if you can’t do anything to help us. We get it-you’re busy too. You have limits on your time, energy, and finances, and we totally understand.
- “I saw a really annoying commercial about eczema the other day. The lady kept saying, “I’m fine. I’m fine. I’m fine. Is that the kind of eczema you have? How do you treat yours? How does it affect you? Does it flare and go into remission, or is it pretty constant? Also, you shouldn’t have to sweat it out in a jacket because of a medical condition. I love you and I don’t want you to feel like you have to hide with me, but if you’re more comfortable covering up I understand that too. Just don’t feel that you need to do so on my behalf.
That last one is how Karen should have started the conversation in the restaurant, if you ask me. It would let blondie know that she cares about her and she wants to learn more.
The reality is, we just want to be treated like people. Intelligent, whole, educated people. We LOVE that you’re thinking of us and wanting to learn more about our conditions. I have friends I used to be really close to that have never asked me about my illnesses. That’s OK. Some people aren’t meant to stay in our lives forever. That’s just the way life goes, and I have nothing but love for them and wish them well. But for those of you who are loyal, loving badasses and are still in our lives and read through this whole thing, THANK YOU. From the bottom of my black, sarcastic heart, I love you for reading this and wanting to learn.
Love, light, and parasites,