Commercials show us people building playgrounds and golfing after taking their miracle RA drugs, movies always show the perfect romances we are supposed to have, TV shows us that most of us should expect upper-middle class, healthy lives, and somehow we are under the impression that life is not supposed to be hard at all. It is human to have goals and expectations. We expect that this life will be one of happiness and relative comfort. I am still trying to figure out the “0.5” in the “2.5 kids” we are expected to have. My third child was actually a whole kid, so guess I passed the 2.5?! Unfortunately, these completely unrealistic expectations also contribute to a lot of our stress and unhappiness – thus impacting our illness in a negative way. Life lesson #4 is to temper those unrealistic expectations. This will help your mind and body more than you ever know!
- Life is hard. Don’t expect anything else. Take a look at life realistically through the centuries. Life is the “easiest” it has ever been in the history of man, yet we have this illusion that life is way too hard of a struggle. Yes we have disease – been around for ages (mostly without treatments), yes we have war, hunger, struggle, suffering, and injustice. All of these have been around since the existence of humans. Media in the developed world has created this illusion that we deserve and should never have to struggle or weather storms. Life is a series of storms with some incredible breaks of amazingness in-between. It always has been, and it is those storms that allow for the true beauty of life to shine through. How we perceive these “storms” ultimately decides how we weather them. No trial has ever been permanently bad. Even the disease has brought so many positives into my life, and I would venture to say it has into yours as well. No one wants to be sick, struggling, and dependant on someone else. However, I expect to struggle. I am sick. I know that my life has to be planned very differently than most people’s. So when something goes wrong (like my photoreaction at Arches), it becomes easier to roll with the punches and be thankful for what I did accomplish, rather than what I did not. It is unrealistic to expect that my life will be anything but hard, but I think most struggle more than they let on.
- Doctors aren’t Gods. We often expect our doctors to have all the answers and treat us with a magic bullet. Considering that we can go to 15 different doctors, and end up with 20 different diagnoses means that doctors don’t have all the answers. Many are winging it! While they are trained in the rheumatics, keep in mind there are over 400 of those diseases that they have to keep up with! Reasearch on the few that are autoimmunes is relatively new and most doctors training predates this information. Unfortunately, we still have doctors that won’t recognize the potential fatal complications associated with most autoimmune arthritis diseases or that any major body trauma could kick in a flare. Disheartening is what it is, especially when trying to get answers! While, we should expect quality care from our doctors, we forget they don’t have the Googling time we do, nor do they have the time to haunt social media support groups for perspective. Doctors also have over-filled practices, leaving us with very little face time and often with substandard care. We have a responsibility to help our doctors in this situation. When you find a good doc (hard, I know), help them out by keeping up with the research yourself and educate them! Don’t expect them to have all the answers! Expect that your treatment will be trial and error. Expect that your doctor will be human. Expect that many meds won’t work. These will make it much easier to handle all these roadblocks as they come up, and they will come up!
- Expect to hurt and expect to get worse. This is a degenerative disease. Whether by age or illness, we will all get sick and deteriorate. Autoimmuners just do it quicker than others. Even with the best meds out there, very few of us escape the daily pain, fatigue, and strife associated with autoimmune diseases. We will never go back to where we were before the disease hit. So much depression is caused because of this single expectation to life a pain-free life. Because of the nature of autoimmune arthritis, we will also consistently get worse over time. The most advanced medicines out there are only effective for about 1/3 of autoimmuners, and by effective, I mean “shows some positive effect” not cured. There is no cure for our illnesses. We will get worse, and we need to live life expecting to get worse. Everything we do is temporary, and this is especially true for Autoimmuners. Every repetitive motion (like typing) destroys our joints and tissues. When I was injured and tried to learn a desk skill (PHP/SQL), within 4 months of consistent typing I needed a new knuckle. Every step I take is slowly crushing my knee, and I think I just dislocated my navicular this last PT round. (Navicular is a bone in the arch of the foot. I no longer have arches in my feet.) However, I expect this and have decided I want the memories. The bones will muck up regardless of whether or not I hike, so hell – I want the memories. I also know that this ability is very temporary. I am one bad flare or major body trauma away from losing it again, so I suck up every moment I am hobbling.
- Expect no one will understand or even care. People can only understand what they have been through. Again. People can only truly understand what they have experienced. So when you complain about the pain of autoimmune arthritis, most people equate that with a stubbed toe. They simply have not felt the constant pain of having their bones dissolved or deformed. Likewise, unless they have a personal reason to care – most won’t. We are the ones stuck between what is considered to me a mild illness and those who have immediately terminal illnesses. Autoimmune arthritis is a long-term terminal disease (trying to coin a new term here). It is potentially fatal, but kills over a long period of time. Again, most of the research is within the last 20 years so most doctors have not been fully updated on this. (***At 14 I found out RA was fatal in an Arthritis Foundation brochure, so the information was out.***) Most people these days are consumed with the daily struggles they deal with (that have been blown way out of proportion as far as seriousness goes). Since we are not dead, this truly can’t be that bad – right? Sad as it is, this is where humans are. Very self-absorbed and completely ignorant of the interconnectedness we have. They feel immune to the struggles we have, and somehow justify our diseases as something we did to ourselves. Clearly we have not eaten enough cherries, turmeric, or ate too much gluten. While this is disheartening, it is reality. Utopia where people actually care doesn’t happen. We cannot expect anything other than reality. We can hope, but not expect. I have found dealing with healthy people much more pleasant now that I don’t expect them to have empathy. Those that do are pleasant surprises, and the stress of an ignorant person no longer boils my blood. It is one of those “Bless your heart” moments as we say in the South! (That means you are an idiot.)
Utopia is a nice concept, but isn’t reality. A healthy, upper-middle class life is nice, but not reality for most. A pain-free, struggle-free life is also not reality. When we expect these things, life becomes a lot more bearable. Mental stress is notorious for aggravating our diseases, and this is something we can actually control (with some practice). Why add the stress and anxiety from unrealistic expectations into the mix? Frustrations will happen and someone will annoy the living hell out of you at some point, but this will help to curb as much as possible! Remember: You can only control your actions and thoughts, not those of anyone else. So temper your expectations. It starts with you!