You should try…

One thing about having a chronic illness is that a lot of people have input on how to feel better. Input on what has helped people they know or input from something they have read or listened to. I hope to write this without offending anyone who I have had this conversation with. I have had good conversations with people during which I felt they were genuinely interested in me and honestly hoping to help. Alternatively, I have had some not so good conversations that have felt more like a lecture on my poor choices or some weird flex on how much they know about alternative treatments. I want to discuss the good, the bad, and the ugly as it relates to talking about someone’s illness with them. And if you are ill, know that you’re not alone in these frustrations. I get that it’s a weird emotion. Being annoyed at someone who is offering you something that could help you feel better? How does that make sense? I know that some of you will get it. I hope to shed some light for those of you who don’t and how/when to better have these conversations. I know that people suggesting treatments or possible diets are not doing so to make me feel bad. I believe that they are coming from a good place and try to remember this when the suggestions do come. I just hope to explain why this can be incredibly frustrating to the chronically ill. Simply put, the main takeaway is that it makes us feel if we are not being as proactive as possible when it comes to our health. 

Diet. Diet is something a lot of these sharers believe they have figured out. I have been asked about my diet so many times. Look. I get it. Diet is incredibly important. The health of your gut is so crucial, and the most recent research on it is fascinating! Who would have thought the health of your gut effects your brain? Your mood? Your energy? Thank you gut bacteria for all you do! I’m sorry that all of the sugar I was eating hurt you…Okay I am getting distracted. But my point is that I understand why diet is where a lot of anecdotal evidence comes from and the following exchange occurs: “I listened to a podcast where someone who sounded a lot like you ate nothing but dung beetles, and they were cured! You should do that!” No. That sounds gross. First of all, what do you mean “they sounded like me”? Did they have ME/CFS, or did they say they felt sluggish and tired all of the time? Because that’s not really what I have. Second, dung beetles? Really? I’m leaving right now. Except that’s not how the interaction goes. In an effort to seem polite, I say something like “oh interesting! I haven’t tried the all dung beetle diet! I’ll see if I can get some beetles off of amazon!” Again, I know this person isn’t coming from a bad place. Maybe they assumed I hadn’t heard of the “dung beetle diet” and wanted to pass it along. Harmless! Right? As an isolated incident, it totally is! Except imagine nearly everyone you have even remotely interacted with making some kind of suggestion like this. “Have you tried eliminating *fill in the blank*?” “Have you tried chugging kale smoothies until the local grocer thinks you’re running some kind of kale-derived drug pen?” “Have you tried eating only during the full moon?” The answer to all of these questions is “yes” by the way…it will save us time later when you inevitably tell me that I should try something…

I have done extreme diets. They do not work for me for the simple reason that the small improvements I felt were not worth the added stress. I might have seen improvement but not nearly enough to justify twisting myself into knots to follow some of these diets. I have to eat a diet that fits into my life and one I can keep without being miserable. It is hard enough being this sick and tired to then have to spit out my sushi because I forgot soy sauce has gluten in it. I’ve been tested for Celiac’s disease. I don’t have it (I’ve even eliminated gluten before for good measure to see what that did for my health). So excuse me while I finish my sushi with its healthy dousing of soy sauce. And yes, I am going to eat some sugar now and again. I’ve done a no sugar diet (as in no sugar. you would be amazed at how many things have sugar in them when you start reading food labels…like ketchup??). If I moderate my sugar intake, I am fine (that’s a relative term here. What I mean by “fine” is that I am not vomiting and curled up on the floor with worsened joint pain and a migraine) If diet cured ME/CFS, all of the people in my community would be shouting it from the rooftops. Yes, I do believe that improved diet helps people feel better, some markedly so. But not one person I have spoken to with ME/CFS has been cured by changes to their diet. Geez can you tell that diet is a trigger for me? Sorry I got a little defensive there…breathe in…breathe out…okay I’m better now! And all of this is not to say that I eat the same as I did before I got sick. I don’t. And I will write another post in the future about what has helped. Not to tell you it will be curative and you should absolutely do it. Just as a guide for those interested.

Another popular suggestion is activity. “Well how active are you?” Were you not listening when I told you I can’t exercise? “Yeah, but like you should. You’ll feel so much better. My aunt said she used to feel tired a lot but then she got a treadmill and just climbed Mount Everest for the sixth time.” First, your aunt sounds cool, but she didn’t have ME/CFS, so her treadmill doesn’t really apply here. Second, I want to leave this conversation too, but I politely say I’ll check out amazon again. As with my diet, I have tried different levels and types of activity. If you read my last post, you will know that I have done a lot of different things to try and increase the amount of activity I can do. Spoiler Alert! You can’t get around the pathology of this disease by tricking it with positive mantras and barre class. The following doesn’t happen: Hah HAH! I got you this time not very well understood and complicated disease! Some person I barely know told me daily walks would help me feel better! You stand no chance!

So I touched on a little of the bad and the ugly (you can make the determination as to which is which, but there is a correct answer). Let’s talk about the good. These are conversations with friends and family who I know are coming from the best place possible. It is an open dialogue, and they ask questions rather than make suggestions. Let’s take the scenario from earlier and tweak it a little bit: “I was listening to a podcast, and the person seemed to struggle with a lot the same things you do. They ate an all dung beetle diet, and claimed to be cured. It sounded insane. They probably don’t have ME/CFS.” And then we would high-five and talk about something else. Kidding! A more reasonable conversation would go like this “I saw an article about how celery juice is helping some chronically ill people. Have you seen it? What do you think?” And I would say: you know I have heard of it! I’ve done some of my own research and wasn’t super impressed. I don’t think I will try it. Then they will respond “oh nice! yeah I thought it seemed a little out there, but I wanted to pass it along!” What a respectful conversation! These kinds of interactions are great. You know that your friend was thinking of you and your struggles enough to pay attention to something that could help you and then asked you what you thought about it rather than tell you should do it.

That’s such a key here. Treat people the way you would want to be treated. If every time you had a cold, someone suggested some outlandish cure rather than just check-in with you, that would get annoying! You know how to treat a cold. You’ve had one before. Treat a chronically ill person like they know what their disease is and how to be deal with it. Maybe instead of offering up a solution within two seconds of the person telling you their diagnosis, ask them how they feel. Offer support and compassion first rather than advice. I had an interaction with a friend recently that I just loved. She honestly wanted to understand how I felt. She wasn’t trying to claim that she knew what it felt like, but she used an acute illness from her own life to try and understand how much pain I was in and what my fatigue felt like. It was such an uplifting conversation. There was no “so you’re tried all the time?…me too?” There was no “I’ve read frog guts smeared on the forehead help with migraines. You should do it.” It was an honest dialogue of her trying to understand what I felt on a daily basis and then being met with compassion. It was seriously lovely. 

And all of this is not to say that chronically ill people never want to hear about interesting podcasts or experiences where friends of friends took a certain supplement that helped them feel better. It is a way to show that you care about someone and the struggles they are going through. In fact, I literally just received an email chock full of advice and found it to be extremely helpful! But it was written with such compassion and an understanding that their experience was not like my experience. Never did I feel lectured or like my illness was a direct result of my unwillingness to try a certain diet (we get it Megan! you love food!). So I would just suggest that first you establish a relationship with a chronically ill person before divulging your 10-point plan for their recovery. Again, ask them how they feel and what their illness actually is rather than assume you know how to treat their disease better than them. And try to frame your suggestions as questions like “what you do think about this?” or “would this be helpful to you?”

Here is the thing, people who are fighting a daily battle against chronic illness do not have the luxury of forgetting they are sick. Ways to feel better are constantly on our mind. We are always on the hunt ourselves for what will help, and we work with our doctors and do trials of things to decide what will work best. But that doesn’t mean we are going to chase down every suggestion made to us, because we get them all of the time. We can be made to feel like if we don’t try everything anyone has suggested, we aren’t trying hard enough to feel better, and that simply isn’t true. We do suggest things to each other in our support groups, but that is kinda one of the functions of these groups. We are all in the same crappy, leaky boat together, and sometimes one of us finds a better pail to get the water out with. What we don’t need are the people in the yacht next to us throwing down celery and dung beetles to help siphon the off the water. Take a life raft over and ask us if celery would be useful. I guarantee that we will let you know.