Secondary Primer for Interacting with a Person Who Has Chronic Illness

I wrote this post two years ago about some struggles with well meaning healthy people giving advice to those of us with chronic illness. This happens a LOT to people with chronic illness. I have been thinking about this of late and a few other things in relation to some of the things that those of us with chronic illness and pain go through with those in our sphere as well as people who are randomly in our spheres for short periods. Very often I know that those of you without chronic illness, and even others with, mean well when they bring up some of these things but often I am also hyper aware of how ableist it comes across when you do. Please stop and check yourself and where you are coming from before you start recommending things to those of us who struggle with chronic illness. There are some things that I wanted to share with you along the lines of my post a couple years ago. This is not meant to sound mean and vindictive but to give you some perspective and hopefully help you have better and healthier interactions with those you come across in life or who are regularly in your life who have chronic illness/pain. Some of the thoughts may come across as hardline or harsh but that is more born out of the fact that many of us with chronic illnesses deal with this stuff multiple times a day, day in and day out. When all we really want to do is just go to the dang grocery, pick up a coffee, enjoy a quiet day alone or simply run some errands but we are constantly interrupted by folks not respecting our space and agency. So just remember that for us this is often from the perspective that you are not the first person to come at us with stuff even though it may be your first time coming at us with suggestions, questions, etc.

My biggest suggestion is that you ASK us if we want your input before you just start giving it. The thing is that you are rarely the first person to come to us with a particular suggestion or even the first person that day. It becomes exhausting to field this kind of stuff all the time even though it is well meaning. Imagine, if you will, you have worked/gone to school/raised a family/etc. for days and days on end with no weekends, you are exhausted, worn through and your body & mind are crying out for a break of any kind but there’s currently none in sight. Now add onto that well meaning people always telling you that you should go to the gym because it will give you more energy or that you need to change your diet because it will fix your being exhausted or that you just need to take a break for yourself to go out and be social. Well, exercise, social life and diet are not the roots of your exhaustion are they? Yes, they may help a little but they will not fix the problem in the long run. Now try to imagine when about the 10th well meaning person comes up to you in a day/week to tell you these same things or some miracle supplement they have found that makes them feel amazing (even though they are not going through what you are with your exhaustive schedule, etc.). Try to put yourself in that place and you will start to have an inkling of what those with chronic illness go through with well meaning people always trying to fix them. So when you feel the urge to try to fix something for us or are convinced you have THE solution, stop and take a perspective check for a moment and then if you still must go forth with it, ask us first if we are in a place or even want to hear your ideas/suggestions. If we say no, please take it gracefully and let it drop. This isn’t about whether your suggestion is the most amazeballs thing on the planet ever. It is however about if we have the bandwidth to have one more person tell us they know how to fix us better than we or our doctors and healthcare team do. (Please refer to my first post on more about this if you need to…)

Secondly, if I have not invited you into the personal intricacies of my healthcare treatment then it is none of your business. Let me say that again, just because you are aware of my medical conditions etc. does not mean that automatically grants you access to the intimate details of my medical life. Yes, I share some things online and in public as I see fit to do so or if I think it will help someone else. This does not mean that grants you access to dive into my medical history and start asking me intimate questions. This is tantamount to me coming up to you and randomly starting to ask you intimate details about your medical health or even your sex life out of the blue. Now, this is not to say that I am not happy to sometimes help answer people’s questions if they are seeking a better understanding and want to be a better advocate. But if you are doing it as a general conversation starter or just to satisfy your curiosity, please don’t, these are not ice breaker topics for most of us; not even close. And if we tell you that we do not want to share the intimate details of our medical history/care by all that is holy let it drop, do not continue to press the issue. I am not required to share this information with you to sate your random curiosity stranger on the train/bus/at an event/in the grocery. I see this happen even more to my friends with service animals and every time I do and the random person pushes the issue it makes me just want to smack them for being rude. I have taken people to task in public for their rude behavior in regards to this and it is amazing how many are then offended that I called them out for asking me or other personal questions. So in my typical effrontery fashion when someone presses the issue I start asking them hyper personal questions about their medical history or sex life in return. I like reflecting people’s behavior back to them in a way that makes them uncomfortable if they won’t leave me alone. Maybe you think that makes me mean. I think it just means I am exhausted and fed up with someone being rude and I don’t want to go to jail for punching them when they won’t leave me alone and I try to ignore them. Though admittedly the visual I get in my head of punching them usually makes me smile inwardly. lol

With my particular illnesses and I know for a lot of others with chronic illness and pain, there are days I can barely remember my own freaking name. So please bear with me when I struggle to come up with a word we have all known since kindergarten. You do not always need jump in and try to finish my sentence for me. Trust me, it is humiliating enough to not be able to remember the word “orange” and to then have to try and juggle my own brain and people throwing suggestions at me it just completely derails my thought process. It is very likely I will start trying to describe to you what I am trying to remember to give you a better idea and to help jog my own wonky grey matter. So just be patient for a few moments or a minute. Honestly it can be super amusing to see what I come up with trying to describe a simple word I can’t remember. Trust me, my husband gets a tickle out of it all the time! Even I am surprised at the mental gymnastics my brain will go through to try to describe the simple word I can’t remember! It’s kinda mind blowing when I look back on it after the incident. lol

I firmly believe in supporting each other with chronic illness and building each other up. That does not mean I am going to take on all of the burdens of every other person I know with chronic illness and cause myself to drown. It does mean that I will encourage you, let you know I see you, share my time and energy when I am able and be honest with you when I am not able. It means that I will be supportive to you in positive ways and try to help you see the light at the end of the tunnel when you are struggling. I will be honest with you when I think you are headed off the rails and need a check and balance and hope you will do the same for me. I know that those of us with chronic illness have the best abilities to support one another in ways that folks who don’t deal with illness daily and constantly can. That’s not saying that people without chronic illness can’t be supportive, they totally can and many are. I just know that really knowing where the other person is coming from due to experience brings something completely different to the table. For instance it is one of the reasons that addicts in recovery are able to support one another in ways that people not in recovery don’t have the basis for.

Please don’t tell me to “think positive” or I need to have a much more positive outlook, etc. You get where I am going with this I hope. Let me tell you something, I am one of the most positive focused MoFo’s you are likely to meet. I am honestly so much so that others kinda find me annoying at times. But here is the crux of the thing. No matter how positively focused I am, it is NOT going to cure me. And by all that is holy if I am sharing about a struggle do not tell me that I just need to look at it more positively! I am going to struggle at times, I am sick that’s part of what happens. If you do not want to listen to where I am at and the struggle I am having, just say so up front and don’t try to shame me into not sharing. I will gladly move along and reach out to someone else who I can vent to or share with. It’s okay if you don’t want to listen or don’t have the bandwidth, I of all people get that. But say so up front and don’t try to make me feel bad for needing to share where I am at. I believe that often when this happens that the person doing it does not realize how disempowering they are being to the person with chronic illness. They often mean to sound empowering but it has the completely opposite effect usually.

I absolutely respect that we all have our own path in dealing with our challenges. I will respect that you have your path if you will please do the same for me. For me, at this juncture with my illnesses, I am merging the best I can of modern Western medicine and holistic approaches. Please don’t assume that if I am not going full tilt in one direction or the other than I am doing it wrong because you are taking that path or have known others who have. For example; assuming that I should completely take out the Western medicines and go completely holistic or vice versa. I respect that you want what is best for me when it comes to my health but remember that I am a full grown adult and I can still make those choices for myself. And if/when it comes to a point that I cannot, that job will fall to my husband not you. My husband and those I have chosen to be my healthcare advocates know the intimate details of my health and healthcare and are in a much better place to make those decisions. You likely do not have access to all of that information and are speaking off the cuff and based on what is true for you. I respect that you know what is true for you but please do not assume that you know what is true and best for me based on a few conversations we have had.

By all that is holy don’t tell me I need to “get out more”. First off I WANT to get out more but physically am not able to a lot, even with help. Yes, socialization is good and social isolation is bad in modern views. I think both are helpful in moderation. But the crux of this is to not assume that we are staying home because we want to. Many of us want to be out more and social but our bodies are not in complete compliance with these wants. And often when we do push ourselves to go out we pay for it dearly afterward. Trust me, I want to be out there dancing on tables & raising some hell again! Okay, maybe not the dancing on tables part….that was kinda humiliating after the fact. lol On the other side of this issue folks offer to visit with me and come to the house. This often ends up causing me a lot of anxiety because I can’t clean as much or as thoroughly as I would like. I know the people who love me don’t care and I get that on a cerebral level. But the truth is I have an anxiety disorder and this just spikes it. So, for me what would really rock would be “Hey, want me to come grab you and we can go get a cup of tea/lunch on a day you feel like it?” That gets me out of the house without my being worried I’ll have to cancel because I can’t drive that day (yay!) and I am not worried you are going to see my messy house that I can’t control right now. So, let’s go get tea! 🙂

Along the same lines of things I encourage you not suggest to someone, especially me, dealing with chronic illnesses is that we just need to exercise more. For the record I was extremely active most of my life. I rode motorcycles, horses, did gymnastics, swam, hiked, climbed, taught full contact martial arts and so much more. I would much rather be out there doing those things than stuck at home in pain. Yes, in many cases more exercise can help some but it can also hurt a lot more. We have to find a new balance with exercise and physical activity and some of us, like me, are now relegated to a much less active life than we were accustomed to. Maybe one day that will change for me, I dearly hope so, but for now it is what it is and I do what I can when I can. Suggesting to me that if I just exercise more that it will cure me or make it all better is likely to put you in throat punch range so I would suggest you steer clear of that. I hated losing my ability to be extremely physical and yeah, it’s still a sore spot so please tread lightly with me on this one and think really hard before you suggest it to others.

I LOVE to laugh and can have the best laugh at my own expense a LOT. I will often even invite others close to me, or when I am teaching, to have a laugh with me about my foibles and challenges. It’s a big part of how I teach and also how I cope much of the time. I find that sharing my ability to laugh at myself and being real about what’s going on with me at the same time helps others connect and be able to open up as well. I need to find the humor somewhere buried beneath all the miasma. I invite others with chronic illness to join me and share their own humorous stories. Though be warned sometimes what we find hilarious may seem kinda dark to folks who are not in the chronic illness community. We find our humor where we can! lol Please don’t try to short circuit our having a good laugh at ourselves. Most of us are very clear where the line is between having a good laugh at a foible and harmful self depreciation is.

On a semi-amusing note if you see me posting on social media or liking stuff that doesn’t mean I am available to take a phone call. lol Usually if I am sharing a lot, liking things etc. I am either trapped in the bathroom in gastric hell or stuck in bed feeling exhausted but can’t sleep am just not up to talking. I get tickled how many times I get a phone call when I am liking things or sharing things a lot. lol

I would love to hear from other folks with chronic illness/pain about some of the challenges you are facing along these lines. Let’s open a dialogue about it, support one another and hopefully help positively educate those around us about how to interact with us in empowering ways!