Funerals for family members are always tough and potentially gut wrenching. Emotions fly all over the place. Some people sob. Some people yell and get angry. Some people sit silently with a stoic facade, as if the outward appearance of strength will magically help themselves and others. Everybody searches for that perfect blended strategy that will allow them to both express their own emotions and comfort others at the same time. Some people are fortunate enough to have a ton of amazing stories of the deceased to share. We find ourselves grabbing for our rose-colored glasses, just in case our memories aren’t what we hoped, thinking that it will lesson our pain.
Ideally generations are able to gather and even broken bridges are able to be rebuilt over the realization that life is short and precious and time should never be wasted. However, this hope for relationship rebirth and mending of fences is truly only dependent on one thing: either party’s capacity for change and accountability. It is unrealistically painful to expect any sort of new outcome without it. As much as we would like to waive our magic wands and affect instant change, it doesn’t work that way. Change and healing are two sided entities that require movement and effort by both parties. I think that affecting change and healing in families is just that much harder because of the increased level of intimacy and emotional attachment. We tend to think that blood ties both bind people together and excuse all actions eventually with mutual exclusivity. I could not disagree more. There are some hurts that cannot heal regardless of shared genetic material, and that just is what it is. I am a firm believer that blood ties do not justify all wounds. We preach self preservation and value every day in order to empower ourselves and embrace the world around us so that we can be healthy both mentally and physically. Why wouldn’t this apply to relationships with family members? Should there be a separate set of rules for families? In my opinion, the answer is simply, no.
Oh the bliss of the promise of a real vacation away from home! I dont care if it is 5 miles or 500 plus miles away. There is something amazing about the thought of an intentional disconnect from your every day normal, no matter how great your normal is. I don’t care how you have to get there….on foot,by bike, by car, or the ever elusive plane nowadays, the unspoken thrill of it hums beneath your skin like nothing else. The promise of new experiences, decreased responsibility and, dare I say it, relaxation is intoxicating to say the least. I even look forward to the bickering of the close quarters of the car or the arguing over directions. Yup. It’s just that good.
I suppose that this particular vacation seems even sweeter, almost to the point of bittersweet because of the realization that we have not had the freedom of choice to travel for such a long time. It also hits me as I hear my almost adult daughters laugh in the back seat. I am so thankful that they still want to come with us and that they are still engaged in our lives. I hear stories all the time from parents that they can’t remember the last time they got to travel with their kids because of lack of interest, conflicting schedules, etc. I tuck that nugget of information away in my mind and hang on just a little tighter, without being too obvious, of course. It just reminds me to prioritize our time together a little more than I do.
The other fascinating aspect of vacations, especially ones with car travel is that they open up the opportunity for great, uninterrupted, sometimes even cathartic, conversation. Issues are discussed, long hidden feelings explored, insights gained, etc. These things are interspersed with a sprinkle of the bickering that I was mentioning earlier as well. I am not trying to imply that the whole trip is bliss all the time…lol. No trip is THAT good. Still, the good moments usually outweigh the bad for us and that is a blessing for which I am grateful. Our little family has grown in so many ways over the years and I think these vacations have been a key part of it. It’s not about the money you spend or where you’re headed. It’s about the time you spend together. So, here’s a toast to the investment of family vacation time well spent. Cheers!
It started off innocently enough…..some serious car accidents that I was not supposed to be able to walk away from. So, right off the top, I already know I am a blessed woman. I have not forgotten that. Then, the residual injuries slowly and insidiously crept in and invaded my bones and nerves, but that was to be expected over time. It’s not the kind of thing that you consider very much at the time because you are just lucky to be alive, right? A few aches and pains are nothing compared to losing your spot on Earth. Gotta keep it in perspective.
However, fast forward 20 years and words like stenosis and spurs and compression dominate my latest MRI. Right now as we speak, I am thanking my lucky stars that I did not have any patients today because I am having the granddaddy of all fibro flares. Being able to be at home allows me to take my Motrin, stay in my pajamas, drink a ton of water, and lay back in my ice helmet all day if I need to. I don’t have to show off my unsteady gait because of the inner ear inflammation. I don’t have to struggle just to move my arms and legs while hot pokers of pain are sticking through them as I am faking a smile. I don’t have to worry that my head and neck may blow right off my shoulders at any minute. ( Ok. Just kidding on that one. I know that is not going to happen. It just feels like it is.) I don’t have to be afraid that someone will want to show me affection with a hug that I might stiffen during, afraid to offend them because their display of kindness will only translate to pain for me. I can run to the bathroom as many times as I want with the temporary IBS symptoms that I get. Please do not misunderstand. If I had patients today, I would get myself to the hospital somehow because that is the job that I love and I would just spend the day worrying about who I let down that day anyway..lol. There is no question about it. I am just saying that I can get through this flare a little faster if I am able to concentrate at home. I consider myself lucky at this point. I am not on any chronic pain meds. That is largely because I am ferociously stubborn and the fact that I realize that, with my family history, that would potentially be a move with more risk than benefit. I still go to work. I live my life as fully as I can. I struggle but am mostly successful in maintaining an empowered attitude, which I truly feel impacts the severity of my disease. But, there are some days like this one when I need to just stop a second and breathe.
The thing is, I am not different than millions of people who are suffering from those chronic, invisible diseases every day. There are so many of them: arthritis, chronic fatigue, fibromyalgia, depression and mental illness, diabetes, digestive disorders like IBS or celiac, Lyme disease, migraines, Lupus, and Sjogrens. So, what the heck do I mean by a chronic, invisible disease? An invisible disease is one that does not show obvious external signs or symptoms. They may cause symptoms like dizziness, pain, fatigue, or mental health issues. None of these are things that a person walking by would notice. If they look ok, they must be ok, right? Wrong! Occasionally, we get excited about one of these conditions if they get featured in an article about a celebrity that was affected. But, the vast majority of the time, they go unrecognized and misunderstood by both health care providers and the general public. This really adds to the mental weight of these conditions for the patient and paves the way for feelings of isolation and hopelessness. Did you know that the U.S Department of Health and Human Services estimates that by the end of 2020, 157 million people in the United States will be affected by a chronic illness? In addition to that, the United States Census Bureau estimates that 96% of these chronic illnesses are invisible. That is a huge number! Did you also know that many studies have been done as far back as the 1990s that looked at the lack of validation( belief that the patient was really suffering) as a factor in their disease. The vast majority of patients in the focus groups said that lack of validation was their most significant challenge in managing their condition. It makes sense though, doesn’t it? We all want to be believed. When someone doesn’t believe us, it actually has the power to cause it’s own kind of pain, beside the physical pain we are already experiencing.
There are so many misconceptions about invisible chronic illness. The first one we have already discussed. A person must feel ok if they look ok. We already know that is incorrect. Most patients with these conditions have spent a great deal of time developing coping mechanisms to allow them to enjoy regular daily life. I do it every day. The second one is the conception that the person just needs to rest and they will feel better. I can tell you first hand that all the sleep in the world is not going to break or cure a fibro flare. Sometimes, you can’t even sleep because the pain gets so ridiculous. A third misconception is that all people with chronic invisible illness are really drug seekers. Labelling all of those patients as drug seekers once goes back to the lack of validation of their symptoms that I mentioned earlier. The implication that they are drug seekers indicates that their symptoms cannot be real and they cannot be in any kind of true pain. Wrong again. Another misconception that I hear is that those patients that unable to work because of their pain must “have it made” because they get to stay at home all day and goof off. I actually have heard people say this with an obvious tone of jealousy because they truly think that those homebound patients have a dreamy lifestyle, doing whatever they want all day. Let me paint you a picture: You are trapped at home, in pain, unable to work and support yourself and unable to do the things that you enjoy on a regular basis. Does that actually sound dreamy to you? I think not. Last but not least, I have heard that stress reduction is all that these patients need to get better and that their pain is “all in their head” and they need to “get over it.” Stress is definitely a factor in pain severity, as is emotion. As stress invokes emotion, pain is heightened. Emotion and perception of pain signals are biologically intertwined. However, stress does not CAUSE pain. You can be just sitting somewhere, minding your own business watching butterflies and a flare can envelop you before you know it. That kind of thinking is far too simplistic to explain chronic pain. It really boils down to another type of lack of validation.
The real question to ask is how do you support these patients, not how to cure them. There are no cures as of yet for any of the diseases that I mentioned. There may be treatments, but not cures. Many of these treatments have side effects that need to be weighed against the symptoms of the disease itself. This is important to keep in mind. So, how do you support them? You support them by listening and believing them and throwing away your preconceived biases if possible. Try not to get frustrated because you can’t cure them or that there is no obvious external marker for you to pick up on and follow. Be supportive when they need it and back off when they need space. These patients are challenging to say the least. I always use a multi-disciplinary approach that addresses the physical and the mental aspects of their condition. The team approach has worked the best in my practice. These patients are going to need pain control options, whether it be massage and acupuncture, anti-inflammatorys, Lyrica or narcotics. Their pain is real. Be ready. Most of all, you need to believe them. Sometimes the very key to their path to a reasonable quality of life may just be getting someone to listen. Have a fantastic day everyone!
The word favor has multiple meanings. It means approval,support, or liking for someone or something. More commonly, it means an act of kindness beyond what is due or usual. It is this second definition that I think trips people up the most, at least in terms of etiquette. The very foundation of granting a favor implies that the bearer( favor giver) is doing something that the receiver( one who requested the favor) really needs and expects nothing in return. It is an act, in my mind, that has the potential to exhibit altruism in it’s truest form. This sounds fantastic, right? Nothing further is owed. The need is met. Everybody goes their separate ways, better than they were before. What is hoped for, however, is that while no objectively tangible exchange has to occur in the opposite direction, an expression of gratitude toward the the bearer would be most welcome, if not expected. That is just common, Emily Post type etiquette. What is NOT expected is complaints and criticisms about HOW the favor was executed, complete with a side of advice on how it could have been done better! Altruism aside, all humans like to know that they are appreciated. It is in our nature. STILL, lack of gratitude, in most cases, can be forgiven since most of us do not do favors just for thanks or praise. However, rudeness, corrections, and nagging tend to tip most of us over the edge no matter how good we feel about doing the favor in the first place.
I have to say that I am fortunate and that does not happen to me very often. However, when it does, I don’t always take it well. My feathers get ruffled and I find myself questioning why in the hell the person asked for help in the first place? Interestingly, it seems to happen with the favors that have required the most planning, effort, and time. How ironic? The good deeds that require the most time often get the most criticism. Is it because the increasing complexity of the favor is proportionate to the amount of potential complaints regarding mistakes involved in it’s completion? Well that is a terrible disincentive and a fine how do you do. Actually, I don’t that’s it. I think that the increasing complexity of the favor probably brings inherent increased pre-existing frustration on the part of the requestor. This makes sense. People aren’t inclined to ask for help unless they are unable to or too frustrated to complete a task themselves after trying a multitude of times. Therefore, the person granting the favor often becomes the target of all that misguided frustration. I am not implying that that is appropriate or okay. That behavior shouldn’t be condoned. However, I am not sure that it is completely avoidable either. It is just one of the risks of doing a favor. I don’t truly believe that people are walking around looking to trick someone into helping them just so they can lash out and make sure that they never help them again. That would be pointless.
There is still another potential scenario of inherent risk to doing favors. I like to call this one the unquenchable thirst. This refers to the recipient that cannot get enough of asking favors, the person that keeps asking for more and more, the one that is never satisfied. You bring them a casserole one time when they are going through a rough patch and suddenly you are supposed to cook for them every night. You know the situation. It’s insidious. It creeps up on you slowly and before you know it, you have no time for yourself anymore because you are busy running ragged for the other person. You start off feeling all warm, fuzzy and needed. Then, the feeling slowly modulates to trapped, tied down and resentful, as if you are on a runaway train and cannot get off. Yup, this is a tricky situation. The onus is completely on you to disentangle yourself from that one.
Sounds pretty bleak doesn’t it? I made it sound like all favors have the potential to backfire. This is an undeniable truth, but I don’t let that stop me. Are my outcome ratios all favorable? Nope. I have slowly and painfully learned that I need to be a little more selective in my process. I tread that fine line between good Samaritan and doormat every day. Sometimes I end up with tracks on my face. Sometimes I don’t. But, when the outcomes are good, they are worth every bit of effort it took to get them. Have a fantastic day everyone!