Why, Yes, I Have Tried Your Snake Oil!
Disclaimer: I’m going on day 20 of unexplained hip pain which has gotten in the way of nearly everything I’m accustomed to doing. So, it’s possible that you could chalk my next 2 blog posts up to my pain-induced irritation and grown frustration with my body. But in reality, what I’m writing is how I’ve always felt, and I would surmise most people with chronic illnesses feel the same way.
Before you click out of reading this, If you DON’T have a chronic illness, this post is actually for you. (If you do have a chronic illness, though, this post is also for you. I hope you find comfort in knowing your feelings are legitimate - it’s frustrating when people skip the validation of your pain and go straight to suggestions.) It’s not meant to shame, embarrass, or condemn you, but maybe no one has told you out of fear of being seen as ignorant or unappreciative. I do understand that those of you make suggestions are mostly well-intended, and I am grateful that you care enough to want to share your great tips. However…
When I tell you about my pain and/or illness, I’m telling you so that you have a frame of reference for what my life is like. I want you to know my experience of life with a painful chronic disease is quite different from your life, even if you actually have a similar illness, and thus, I have to operate in different ways spiritually, emotionally, mentally, and physically than you do. I just want you to know this, so that when I can’t make it to an event, or if you don’t hear from me for a couple of weeks, or if I actually don’t care what I look like going out in public, you have a baseline understanding that I do not function like others.
Yes, I do actually know, and have researched, about the connection between leaky guts and autoimmune diseases. I even charted my eating for portion of time. Like most people with chronic illnesses, I have sought many, MANY doctors, naturopaths, and acupuncturists. I do indeed understand that not all doctors are good doctors, which is why I have seen so many! I have added turmeric to my diet, and I have tried cutting foods out of my diet. Of course I know that what I put into my body is important, this is common knowledge pounded into my brain in the form of a food pyramid since first grade, after all. I have spent countless hours in online forums researching any and every cause, treatment, and cure. Yes, I do know that Jane’s mother went raw vegan and her chronic back pain disappeared. I have detoxed. Yes, wild caught fish is much better (jokes on you - I’m allergic anyways)! I have tried emu oils and tiger balms, and I certainly have researched CBD. Trust me when I say that whatever you are about to suggest, I have most definitely researched, if not tried on my own.
You see, most of us with chronic illnesses don’t actually want to have the illness. And we have acted accordingly in our quest to find relief. Of course, there people who we assume like to be miserable and are unwilling to make any lifestyle changes to become healthier. But the vast majority of us have tried many different options desperately and continuously. We don’t enjoy taking 10 medications, but those 10 medications have allowed us to live a somewhat normal life. And even on those 10, we have added supplements, natural medications, tried to come off of them, and begrudgingly taken them daily. But life goes on, with or without us, and we have chosen to take the path that is allowing us to live a life as close to normal as possible with what we have been afflicted with.
I have come to the realization that people make suggestions across the board - it’s not just me or the particular people around me. I follow Selma Blair, an actress who recently revealed she has an aggressive form of MS, on social media. The comment sections on her posts are cringe-worthy at the least. Imagine believing that because your cousin’s friend’s mother was “cured” from MS by cutting out broccoli, you are the authority on what she should or shouldn’t do. I’m absolutely amazed at everyone’s suggestions, as if she, a member of Hollywood, doesn’t have access to any and every medical, psychological, and natural expert in the world, with money to pay for personal chefs, trainers, worldwide flights, and so on.
I do not know Selma personally, but I honor her transparency and willingness to be a “poster child” for living with the devastating effects of MS. I would like to believe I’m not far off in assuming her sharing her experience is NOT to receive suggestions on how to manage her disease, but rather to use her platform to show what millions of Americans deal with on a daily basis. And again, I get that people want to see her healthy and cured - we all want to see a miracle, but this is a perfect example of when it’s important to be discerning with suggestions.
Whether you’re Selma Blair or Amanda Hughley, we weigh the costs and benefits of sharing our illness with others. Some people we have to share with - because we need support, prayer, and understanding (or because you want to be obedient and in God’s will 🙃). With others, we choose to stay silent, because it serves no purpose. And still others we regret telling, because they have failed to validate our experience with pain and disease and have skipped straight to assuming we have not taken into account all of the very confusing, conflicting, and sometimes downright dangerous, suggestions available to us.
We love you - our healthy brothers and sisters - we really do. We love you so much that we have allowed you to view our journeys with illnesses. You may have seen the toll it takes on us and our families, and you’ve maybe even seen us at our worst. We understand that your intention is not to do this, but often your suggestion(s) feels like a lifestyle judgement, an intellectual insult, and/or an accusation of laziness. (Please reread and understand that!) Many of us continue to hold on to hope of healing. While we are waiting for that to happen, though, we are often working on spiritual, mental, and emotional healing to continue enduring our physical fight. And so often, that healing comes from being able to be transparent without fear of judgement, shame, or accusation. So please, use discretion next time you want to make a suggestion to someone who is in the middle of this battle. The best support you can give is to listen, acknowledge, and pray.