Understanding... or, Lack Thereof

I often write about and harp upon the need for understanding when it comes to people struggling with chronic illness and/or life threatening illnesses. Tonight it is time for me to harp on this yet again because Sheila is hurt and I am subsequently angry and rapidly losing my patience with far too many people who don't seem to "understand". As a result of this lack of understanding, I am truly at my wits' end and we are exceptionally close to again shrinking our circle of family and friends if this very tiring behavior does not change.

I, myself, have a long list of health issues and struggle with significant disabilities every day. The major difference today, however, is that I am referring to and coming to the defense of Sheila since she is very upset right now and has been very upset at the last two family events because of this rather callous behavior. It has gotten to the point where Sheila actually dreads attending any family events because so many people nag her to do things she simply is unable to do. 

Yes, you read that correctly... Sheila actually dreads attending any family events at this point which, unfortunately, is due to nothing more than a thoughtless lack of understanding by some in our life.

I had three options in coming to Sheila's defense... To be honest, I'm quite angry so the first thing that came to mind was to show up at this evening family event tonight, alone, to express my anger in person at the very people getting Sheila upset. Common sense tells me this would not have ended well so I refrained from doing this. Instead, I decided I should write about this frustrating problem here without naming the few names involved in the hope that it may help both this family as well as other families of chronic illness. The third option would have been to do nothing and just go along with Sheila's decision to forego any family gatherings until she is ready to give everyone a chance again. Writing here was the best option since I already write about this stuff regularly and I have a large following of chronically ill patients who struggle with all the same things as we do.

Let me start by stating an obvious fact which goes against far too common perceptions but which may be at the root of our particular problem of misunderstanding. The fact is, there are tremendous misunderstandings about a particular phrase which leads to a ridiculous common misconception. The phrase is "cancer survivor".

Just because someone is a "cancer survivor" does not mean that the treatment and lingering effects are behind them and completely gone. Being a "cancer survivor" does not mean, by any stretch of the imagination, that you are perfectly healthy again. Even being declared "cancer free" at this moment in time does not mean the patient is not struggling with tons of lingering ill effects. 

"Cancer survivor" simply means just what it states... that you are surviving... that you are not dying at this moment in time. Until there is a cure and until the terrible effects of her treatment wear off (if ever)... this is where Sheila is today... she is surviving and everyone in her life must understand this fact.

"Surviving" has never meant living a "normal life". Surviving means trying to make your life as normal as possible. If you do not understand this basic fact of chronic illness, then you will probably not understand my point here and continue to be a source of grief for those of us who needlessly struggle with relationships due to the effects of chronic illness.

My own health is so consistently poor that we rarely talk publicly about Sheila's health and, therefore, her struggles may often go unnoticed by many in her life. Her struggles never go unnoticed by me but certainly do by many of those in our life so I must come to her defense now by explaining some things which we both feel we should not need to explain to anyone in our ever shrinking circle of family and friends.

Before hot heads prevail and before making any drastic and unexpected changes to the list of who is in our life, it would be fair to run through some quick facts here to remind everyone about Sheila's health in the hope of bringing about some much needed understanding... 

Nine years ago, Sheila learned she has breast cancer. She endured a grueling six years of a combination of chemotherapy and radiation therapy which would suck the life out of healthy people nevermind an unhealthy body which is already struggling because it is infested with life-sucking cancer. 

A few years after her original cancer surgery and still amid her chemotherapy regimen, she had to endure a second cancer surgery (a pre-cautionary one) which added a whole slew of new secondary problems. 

Through all of this... through the entire process... Sheila continued to work full-time as a single, unsupported mother to ensure a roof was over the heads of her children, they were clothed, there was heat, there was electricity, and there was always food on the table. As if all of this isn't enough for people to understand that these experiences sucked every bit of energy out of her, having to work a full-time job through all of these exhausting medical procedures, treatments and problems sapped even more energy from her struggling body. Sheila is tired... rightfully and expectedly so.

The biggest lingering effect of all of this on Sheila has been overwhelming fatigue and a lack of energy. The cancer itself is known to do this... the chemotherapy alone is known to do this... and the radiation on its own, especially, is known to do this and to cause lingering issues. Putting all of these debilitating factors together and compounding this problem is the fact that she has continued... through almost ten years of this struggle... she has continued to work full-time everyday and tried to live "as normal a life as possible". 

Neither one of us are looking for sympathy here. Some empathy and understanding about our physical limits, however, is absolutely necessary and even expected by those who intend to be in our life.

There are quite a few other effects which affect our lives everyday but a lack of energy is the primary lingering effect and the only thing worth mentioning here right now. As a result, we both carefully manage our energy.  We both must carefully manage our energy.

So, we both try to effectively manage our energy. What does this mean? 

We have spent years perfecting what works for us. We have priorities, for sure, and our priorities likely differ immensely from those who are healthy. Quite frankly, topping our priority list, our health comes first and foremost... it rules the roost every moment of every day. Our health dictates what can and cannot be done at any given time so our health is at the top of our priority list.

Near the top of the priority list, right behind our health, is "each other" (more couples should do this but that is an article for another day). 

Another priority for us is that we both want to have energy for our grandchildren. As anyone would expect, this is also very high on our priority list. Sheila now has her own "clan" of which she is the matriarch and which requires considerable time and energy. This time and energy does not simply materialize out of thin air... we must cut other things from our life in order to devote time and energy to this new family of three generations. 

Household chores rank right up there so we can eat, groom ourselves, dress in clean clothes, and do everything else which gets done in any home. When we do plan to do anything beyond these aforementioned things, we must prepare, rest, and rearrange all other activities. This can be a monumental task... it is difficult, at best. When we want to add one thing to our schedule, we must eliminate one or more things from our schedule.

Both Sheila and I also must put aside time and energy for our own physical therapy regimens. This rarely gets bumped off our schedule and only a few things rate high enough on our priority list to bump this.

Not that I feel it is anyone's business but, since I'm asking for some understanding, perhaps I should share some additional detailed information about some of our priorities. 

One of our priorities is a date night alone each week. Just the two of us... alone at a restaurant for dinner. We must, however, prepare for this one short evening out to dinner because it takes a lot out of both of us. Other than that, evenings are set aside for dinner at home and resting our overly-fatigued bodies which are still recovering and fighting on a cellular level. I can't tell you the last time we met friends out on the town at night because it is just something we cannot do anymore unless we sleep all day. We do plan an occasional afternoon on the town with friends but we just cannot find the energy for this at night after being awake during the day... never. It is not an option and it is not open for discussion.

I already mentioned this above but it is worth mentioning again because it takes so much out of us... We need to have energy to cook for ourselves, to clean our clothes, and to do a million other chores most people just take for granted. For us, however, these chores are all energy-sapping activities. Every activity takes a little out of us. (For more on this, see my blog post The Gift of an Extra Spoon.)

To those of you who are constantly and callously nagging Sheila about occasionally missing an evening outing or not having the energy for a family event or anything else you may unthinkingly run your mouth about, I have a few nagging questions for you... Have you had breast cancer in the last ten years? Have you had the exact same chemotherapy regimen as Sheila did? Have you endured radiation therapy? Have you gone under the knife twice for a cancer-related surgery, first to remove a cancerous tumor and then again in a more invasive surgery just a few short years after treatment began to minimize the chance of the most likely recurring cancer? Have you been subsequently thrust into and find it difficult or impossible to get a handle on endocrine and hormonal issues due to all these estrogen receptor cancer surgeries and treatments?

If you have answered "no" to any of these questions, well...  then you really have no business judging Sheila's energy level for things beyond our own set priorities. In the future, my advice is to think first and be a bit more understanding of those who are struggling with chronic illness and incurable illnesses before you lay a guilt trip on them, bust their chops, or impose judgement. Those struggling with chronic illness have more than enough to do (including what they want to do as well as need to do) and not nearly enough energy to do even a fraction of it all. Simply be a bit more understanding of this fact.

Sheila is living the effects of these things every day. Imagine that instead of Sheila experiencing this, it is you who is now living this life of grueling ill effects every moment of every day... How would you feel if, when you attend every family event, you must endure a barrage of thoughtless and callously worded demands, attitudes, even grief and such family-induced guilt that you do not want to attend another family event in the future? All the while, you are secretly beating yourself up because you know you had to say "no" so you could take care of yourself. Trust me... both Sheila and I know how this feels and there is absolutely no need for this guilt... there is no need for this emotional beating... there is no need for this friction... and especially when this illness has never been a secret. Patients are open about their illness specifically to avoid the burden of this sort of nonsense.

I can tell you with absolute certainty that there is no room in the lives of those struggling with chronic illness for any of this type of thoughtless and ignorant behavior. There is absolutely no reason for it. Those struggling with chronic illness already have enough on their plate. The last thing they need is extra grief and guilt piled on by family and friends.

Sheila is already struggling with lingering fatigue and other debilitating associated problems and these callous attitudes cause unnecessary grief which is a massive sap of much needed energy. As I mentioned a few times already, Sheila actually dreads attending family gatherings and family events after enduring a barrage of thoughtless comments at the last two family events and she has already made a decision to forego some upcoming family events if people don't begin to understand. This is not right and it needs to change. Shame on anyone who makes her feel this way!

I certainly understand that people can easily forget about other people's illnesses and struggles. We "look" fine when you do see us so you think all is well. I understand. When you realize that you forgot about someone's illnesses and struggles, simply pull your foot out of your mouth and apologize... don't just open your mouth to swap feet.

I certainly understand that otherwise caring people can easily slip up and sometimes say some pretty stupid things. I truly understand this as well. Simply apologize, learn and move on.

Today, however, it is time for me to speak up and come to Sheila's defense by reminding them that she is still surviving cancer and, perhaps more importantly, surviving the decade-long grueling cancer treatment involving multiple surgeries as well as the cancer itself. Quite simply, she is tired and trying to live as normal a life as possible. All we ask for is understanding... not guilt... not pressure... not persuasive arguments about our priorities... but understanding. 

All we ask is for understanding and for people to think a little bit before busting the chops of someone with chronic illness about being unable to attend some outing. Truth be told, we already bust our own chops far too often inside our head and we are far too critical of our own weaknesses. We don't need those around us doing that too. Think first... maybe, just maybe, there are some very valid reasons why either of us must decline some outing or event.  

Understanding... those of us struggling with chronic illness and incurable illnesses need understanding more than anything else. 

It truly escapes me why I must write about any of this here in order to get those in our life to understand. Why must either one of us, or both of us, endure uncomfortable demands and unnecessary grilling by so many people at every family event when everyone knows we each struggle with our own chronic illness? All we ask for is understanding of our limitations. I can tell you with absolute certainty that all you will accomplish by trying to lay on the guilt or by pushing demands and persuasive arguments is to push us away because we have nothing more to give at the moment.

So the point of my rant here is that this constant barrage of callous remarks and family-induced guilt just might have the opposite effect of what you may have intended and desired. This relentless and almost-juvenile behavior is tiring to put it as kindly as I can (I'm angry enough to have used a few more descriptive and colorful adjectives... this has been edited, and re-edited... and re-edited yet again in order to tone down many of my adjectives, adverbs and verbs). Quite simply, there must be more understanding by those in our lives or we will feel pushed into doing what is necessary to "survive" by selectively shrinking our circle of family and friends in order to minimize needless sapping of energy.

Common sense dictates that when people make you feel uncomfortable, you stop spending time with them. When people sap you of much needed energy, you stop spending time with them. Sheila is upset and uncomfortable which is unnecessarily sapping her of far too much energy. This is a very simple equation and, after getting this far in this blog entry, I'm sure everyone reading this can do the math.

Neither one of us has the energy for this type of nonsense. We both wish we had the energy to do whatever we wanted, whenever we wanted or even to do whatever everyone else wants us to do. The fact is, we don't have the energy for everything. More to the point, at the moment, Sheila actually dreads attending family events because of what can only be called a serious lack of understanding by those around us.

The really absurd thing about all of this is that just a little bit of understanding can resolve virtually all of this problem. I can't believe that anyone might think that this is an unreasonable request.

Understanding.