Chronic Illness and Pain: What You Need to Know

On behalf of all those dealing with chronic illness and/or pain:

- We're sick every day - just that some days are better.
- Most of us don't go around moping and trying to get sympathy though. We just want to get things done and get through life like everybody else.
- Pain and some chronic illness is is physically exhausting. If we say we need a nap, we NEED a nap. It's a necessary part of our daily routine.
- We don't sleep well at night and sleep is often elusive. Noises, light, discomfort and temperature extremes contribute to sleeplessness.
- Chronic illness and pain lead to other conditions like depression, anxiety and physical ailments and secondary conditions.
- Even minor relief of baseline pain is equivalent to pleasure. After being in a painful position for hours and then lying down or resting can bring a few moments of joy. Let us enjoy those moments.
- Please be patient with those who are hobbling around or walking slowly. Just because we aren't using a cane, walker or wheelchair doesn't mean we're not struggling.
- It may seem ironic, but some of us struggling with chronic pain/illness try to stay physically active... even running, hiking, cycling or other activities that others who don't suffer from those conditions may not participate in. It doesn't mean that the pain isn't there. It just means that we have to work that much harder to stay physically fit.
- Some of us struggle with multiple conditions/disabilities. Once again - just because there isn't a wheelchair, cane, walker or some other physical manifestation of a disability, doesn't mean that it doesn't exist or that we're "faking it." Accusations or speculation that we're doing this purposely to get out of work or to commit disability fraud are hurtful and just add to the anxiety we're already experiencing.
- Just because we can something one day, does not mean we can do the same thing every day. We have good days and bad days. The good days are usually a dip in the baseline of the symptoms. We're not "getting better" just because we have one good day or several good days and we're not necessarily getting worse because we revert back to baseline. Similarly, just because we can do one thing well, doesn't mean we can do another thing.
- Sudden starts, stops, jolts, jerks, surprises/shock can cause intense pain and/or trigger an adverse emotional/mental episode.
- Besides physical pain and/or mental impediments, there are emotional factors going on as well. Many of us have to deal with guilt and shame or feelings of inadequacy and limited self-worth. It helps to know that even though we have severe limitations, we are valuable to someone or have worth somewhere. We have limitations, but we are not useless.
- One of the fears of those who are on disability is that we'll lose our disability "status" and be denied our income or worse, have legal trouble or be investigated because some do-gooder thinks we are committing fraud. Even though we may be eligible to be employed (perhaps part-time or temporarily, even full-time), taking a job could jeopardize a disability claim and cause immeasurable financial distress. It's usually not worth the risk. We may engage in hobbies that mimic employment or find alternative ways to generate income on the side, but otherwise we "aren't looking for work." It may make you angry that there are actual fraudulent cases that exist, but it's not your place to try to sort those out or launch a DIY amateur investigation. This is one of areas where "mind your own business" is the best policy.
- We ALL deserve to try to find fulfillment in life. Pursuing an education, hobbies, recreation, volunteerism, religious worship or other methods of finding fulfillment should not be discouraged. Keep in mind, also, that those of us who commit to such things may not always be able to fully participate.
- Disability is a spectrum. Some people have severe limitations, while others are capable of doing some activities or even be employable. It would be considered rude and an invasion of privacy to probe into whether a person can or cannot do something or to compare one person's disability to another's - even if you are comparing your own disability to another who is disabled. Nobody knows what anybody else is going through.
- For someone with such conditions to say: "I'm fine" we're probably lying. Most people ask how we're doing as a matter of greeting anyway, not to really know how we're doing. It's better not to burden others with our pain and ailments.
- Having physical pain or mental/neurological conditions is not necessarily contagious (unless the illness that's causing it is). It's okay to touch us, hug us or attempt to comfort us. Sometimes, our movements or the words/sounds that come out of our mouths seem bizarre, but we mean no harm. It's as awkward for us as it is for you, but you can try to show empathy and compassion, mostly by not overreacting.
- Many of us have families with our own children or grandchildren. Disability alone does not necessarily make us bad parents. Sometimes we need assistance with daily tasks or help with our children. Sometimes we need respite to heal or manage life's challenges because we are much more susceptible to being overwhelmed than those who are not afflicted.
- The methods we use to manage our pain and illness differ widely. What I've found to work for me may or may not work for someone else and vise-versa. If you've found something that works for you, good. Please don't try to pressure me to use your methods or shame me because I am doing something different or not doing something you think I should be doing.

There may be other things to consider because we are all different and we all cope with pain or illness differently. This is from MY perspective, which may differ from anyone else's. I welcome comments or suggestions from others who suffer from chronic illness and pain or loved ones of those who have chronic conditions or disabilities. Suffice it to say that compassion and understanding go a long way.

Division by Demographics

Let's look at demographics for a moment. We each belong to a particular demographic - well, numerous demographics actually. These demographics add to the uniqueness of the individual, but also helps us to identify with others like us in those ways. There is nothing we should be ashamed of about these unique traits, most especially if it is a feature we have no control over.

Anyone who has been paying attention can't help but notice that "news" entities and social media (including individuals who subscribe to social media) are ramping up their campaign to categorize us into our respective demographics - and cause divisions... to generate enmity between those who are different from one another. A quick glance at an online news page, a periodical such as a printed newspaper or magazine, television stations and even Facebook or Twitter can give you an indication of what's going on. A high percentage of headlines feel it necessary to include demographic qualifiers such as race, gender, age, religion, ethnic/national origin, political affiliation, disability or health status, sexual orientation, economic status, education level, and so forth.

Why is this so? There are several reasons I can immediately think of. One reason is that it's a hot button that gets ratings. It causes anger and stirs the pot, drawing viewers, and thus generates revenue. This is sickening to think about because media moguls are raking in billions of dollars by causing contention and divisiveness. They don't really care about the long-term results of their irresponsible (and often untruthful) reporting - but what's most important to them is the bottom dollar. Contention is one of the commodities that sells and it just keeps selling. It's a cash cow for those who are sleazy enough to partake.

Another reason is due to a secondary effect. We all have strong emotions about our own demographic(s) and we want to either be recognized for something unique or we just want to be left alone... protected from persecution and discrimination. When the pot stirrers (usually media or at least fueled by mass media) bring up unsavory headlines that paint a broad stroke about a particular demographic, individuals tend to get on the defensive. Many of us want to band together in our respective demographic groups or at least speak out as individuals against those who have abused the First Amendment, weaponizing their right to free speech and press and going so far as assembling to suppress others' rights - even under the name of religion (or pseudo religious beliefs - or lack thereof) as a means to contend with, and ultimately gain dominance over different demographics.

Yet another reason (and this is probably what scares most of us), is that such divisiveness is fueled by and funded by dark political, social or religious entities. Hiding in the shadows or appearing as valorous icons, they employ angry mobs and the press to do their dirty work - using smear campaigns of their adversaries, while making their cause appear to be compassionate, altruistic and for the general betterment of society. Nothing could be further from the truth though, because when we are engaged in divisiveness, there can be no unity. It is the mentality of an evil despot that: "there can be no civility until our campaign is victorious."

It's really difficult to remain unspotted from this sin because it is so pervasive. When you are navigating a stream of raw sewage, it's hard not to get splashed by it occasionally. Personally, I have tried to step away from the onslaught, and at least have diligently tried refrain from being an instigator or instrument in propagating divisiveness, but it's tough. I'm doing my best to love and reach out with genuine compassion to my brothers and sisters on this planet and I would like to extend that challenge to each and every one of my friends who has taken the time to read this. We are not perfect people and we falter every once in awhile, but if we are moving in the right direction and we pick ourselves up and rectify our faults when we fall, that is the best we can do. My challenge is to not engage in or even patronize media that includes divisive headlines or content. Just keep scrolling past or don't buy their periodicals or watch their shows. Hopefully, by our efforts to not participate, we can clean up our media and work towards becoming more united. That is my hope anyway.