Written by Lee Stevenson. Sorry I am a lousy editor.
Those of us who have been chronically ill or are still chronically ill need to speak out about what we are enduring. If we do not speak out then society will continue to sweep us under the carpet and falsely justify the things they are doing and have done to us. If they believe in God they have a lot to make up for because they have wronged us and the bible requires they make up for it more then they wronged us. I am not going to cover the biblical aspects of things in this article but we need to speak out about everything we endure including the emotional aspects of it.
I am doing this article based on my personal experience and my experience with helping others to heal. I am going to discuss as accurately as I can the emotional aspects of what happens when someone is chronically ill and how the vast majority of family and friends react to those who are chronically ill. There are a variety of emotions involved with chronic illness and they occur for many reasons. Oftentimes there is brain inflammation. Oftentimes these emotions result from the person desiring to be able to function normally again . I have found oftentimes it is because the person’s friends and family have emotionally and physically abandoned them and even ostracize them while putting on a show that they cared. I experienced all this. Yet when others were not around their actions and the things they would say to me contradicted what they made things appear to others. Now combine all this with the fact that most who are chronically ill have brain swelling and are struggling mentally with the many issues involved with brain swelling. For example mood swings, personality changes, sometimes it takes so much mental energy to block out the pain they have very little mental resources left for emotional or even basic functions of life. I am finding society as a whole abandons the chronically ill especially if they have a tick borne illness or interstitial cystitis some of the most painful conditions but the illnesses cannot be seen and because the person looks healthy most refuse to believe they are suffering as severely as they are. These are referred to by those who suffered from them as invisible illnesses. Since I suffered from them it had a double meaning to me. One meaning is no one believed I was chronically ill because they could not see my illness and two because after I got chronically ill I seem to become invisible to family, friends and society. Society puts on a show that they care, but from personal experience I have found that is exactly what it is just show. When it comes to providing for the real needs of the chronically ill with things like emotional support or physical support the chronically ill are pretty much on their own. Society takes a non biblical approach and tries throwing money at the problem while ignoring the actual needs of the chronically ill. The chronically ill are victims of family, friends and society.
Usually some of the main feelings a person who experiences chronic illness is sadness because they cannot be there for others or they cannot fulfill their responsibilities that are necessary for example family, or household responsibilities. I have found society puts on a good show at pretending they care about the chronically ill but in actuality they abandon them by not providing for their emotional and physical needs which includes trying to reduce emotional and physical burdens so the person can focus on healing. Because they offer very little help and oftentimes expect a lot from a person who is chronically ill it dramatically increases the time it takes for the person to heal. It often takes every ounce of energy for someone who is chronically ill to just fulfill their basic life functions. Even eating often can be very exhausting, things like taking a shower or even brushing our teeth become very labor intensive for those who are chronically ill. When a chronically ill person has good days and can easily do certain things they cannot normally do society seems to take that as evidence they have healed and abandon them even farther. We experience even more sadness and anxiety because now we are trying to fulfill what others expect of us because we do not want to let them down and in the meantime we can feel the added emotional and physical stress causing our health to decline. When we try to express what is happening often we are met with responses that are cold and uncaring. This causes those who are chronically ill to become emotionally and even physically isolated. The very support system they thought they could count on is completely neglecting their needs and not even acknowledging them. This causes the person who is chronically ill to experience extreme loneliness even if they have many people around them.
We often times become irritable because we are struggling to maintain our composure because of the pain and mental anguish we are experiencing. Top that off with how the chronic low grade inflammation has affected the brain it takes all we have not to lose our tempers and get angry over the littlest things that normally we would think nothing of. Add this to how most who are chronically ill are being treated and neglected it makes it even more difficult to not become irritable. Not only that but the chronically ill realize how something someone is doing is affecting them mentally and physically and they are trying their best to conserve mental and physical resources to survive and heal and for the most part their needs are being neglected and ignored.
There is a lot of anxiety that comes with chronic illness because it takes many many doctors visits to get diagnosed and because modern medicine has been so heavily indoctrinated by the modern day corporate science they have no idea how to help those who are chronically ill so those who are chronically ill also end up getting abandoned by the medical community farther isolating them. Most chronically ill have to become their own researchers and spend many many hours studying so they can learn to heal. In the meantime they are very aware of how close death is. Many who are chronically ill have others who are counting on them and they do not want to leave them by dying. They also want to be a part of their lives but the illness takes so much away from them physically and emotionally that they have very little left for friends and family. They watch their lives crumbling around them and their families will put the blame on them farther adding to their anxiety. They will nit pick at the chronically ill pointing out responsibilities they are neglecting. Not understanding why they are spending so much time researching and speaking to others so they can learn to heal. The chronically ill are doing the best they can to learn to heal and want nothing more then to be there for their friends and family yet those very ones will be the ones pointing out their inadequacies that the chronically ill can do nothing about. Oftentimes this will cause the chronically ill person so much emotional distress that it starts taking from them physically and it causes their health to decline even farther causing even more anxiety.
Being chronically ill also comes with the feeling of emptiness, hopelessness, guilt, and we may even feel worthless. Those who are chronically ill lose much of their emotional and physical and even financial support. Those they needed the most distance themselves from them or even add to their stress and physical demands instead of supporting them so they can heal. The mental energy needed to focus on healing and on working just to function takes a lot and there is not much left for even basic things such as planning a meal or even going shopping. The chronically ill person feel emotionally empty from being isolated and from having to use so much of their mental energy for others things they have very little left for emotions. With the chronically ill being expected to function normally and fulfill the normal aspects of their lives which become a mental and physical burden that hinders their healing and they can feel it they start feeling hopelessness. With the medical community being so corrupted , family , friends and society expecting more from the person then they can actually give it causes a sense of hopelessness because the chronically ill person forces themselves to do things that are emotionally and physically demanding which causes their health to decline. Things such as family gatherings can be very emotionally and physically taxing on someone who is trying to block out pain and who is physically wiped out. The slightest bit of stress can dramatically set someone who is chronically ill back. When I was chronically ill and would point this out to people they would tell me “life is stressful get over it. “
A person who is chronically ill is usually so focused on healing that things they used to find pleasurable like going to social gatherings or going on a date become non pleasurable because of the physical and emotional resources that have been used to do those things. Even sitting and talking with family had become emotionally and physically taxing for me because I had to watch what I said or did because I would get a lot of criticism about how I lacked responsibility and didn’t seem to care about things anymore. In actuality I cared deeply but was so emotionally and physically drained and I was trying to do my best to conserve energy mentally and physically so I could heal. Guilt comes from this because we realize we are not fulfilling our responsibilities and we have become a burden to others. Usually the guilt is farther increased by those around the chronically ill pointing out the things they are inadequately fulfilling. The mental resources it takes for a chronically ill person to block out the pain , the fatigue and many other health issues causes those who are chronically ill to become absent minded, have memory loss, become emotionally distanced because of the amount of mental energy it takes to deal with the illness. Oftentimes we do not want to burden others so we will try and pretend we are not as sick as we actually are which comes with it’s own guilt because now we are deceiving others adding to our problems because they will expect more from us. So to reveal this to them after we have put on a show of being better then we actually are means we expose we have been deceptive. This can cause a flood of emotions between the people involved and oftentimes for me resulted in them not believing I had been pretending to be better than I was so they would still not offer the support I needed. I learned from experience when we hide how much we are actually going through we do a disservice to all those who are chronically ill because we are enabling the behavior towards the chronically ill by hiding our suffering. We also are enabling the medical communities to sweep us under the carpet and discredit us and make us look mentally ill instead of exposing the truth of the medical inadequacies and neglect.
All of the above mentioned things may cause those who are chronically ill to have trouble remembering thing, trouble in planning things, difficulty in making decisions. The chronically ill will have good and bad days but society only sees the good days and are critical of the chronically ills mental inadequacies when they are having bad days. It seems that society only chooses to see the good days the chronically ill are having and mentally block out the bad days and use those good days to justify their lack of support and their neglect of the chronically ill. They start making unreasonable demands setting the person back mentally and even physically.
Adding to the problems a chronically ill person has is the fact their sleep is affected by their illness. Because the body needs sleep to heal they may have difficulty waking also many health problems can cause excessive sleepiness. Some may switch between being excessively sleeping to having lot of energy which is what occurred with me. There would be times I would sleep for a week none stop then there would be times I could not sleep for a week at a time. Oftentimes the circadian rhythm becomes disrupted when a person is chronically ill causing them to wake at the wrong times of the day and sleep at the incorrect times. I experienced all the things mentioned. This adds to the stress because all we want is to be normal again but oftentimes people will complain how much we sleep and say if we would get up and move around and quit being so lazy we could get some things done. This also adds to the guilt because we are very aware of how our irregular sleep patterns are affecting our lives.
The things a chronically ill person experiences can cause them to have thoughts of death. Suicide attempts and suicide is very high among those who are chronically ill . I thought of dying and desired to and even prayed for it. I believe because of the damage my body had suffered there was no way it could recover. I thought I would be useless the rest of my life and felt like I was a prisoner of my own body. Though I did not try suicide nor would have I wanted to die. The pain was beyond anything I ever thought I could endure. Yet no one would acknowledge my suffering and my pain. Even now if I mentioned what I endured people will criticize me and even make it appear as if I am crazy when I mention them. Oftentimes they even blame the chronically ill person’s behavior on being mentally ill. This further adds to the desire to die. I am glad I did not die and I am very happy I have learned to heal and have had the opportunity to teach others they can heal.
I am not blaming those who neglect, ignore or add burdens on the chronically ill only but the blame also goes to the chronically ill oftentimes because we try not to burden others with what we are enduring. When we do get criticism for what we endure we easily just go back to hiding it believing it will make us less of a burden on others. We go back to trying to pretend like everything is ok in the meantime it is causing our health to decline because we are fighting very hard to appear to be somewhat normal and functional. In doing so we are doing a disservice to all those who are chronically ill because we continue to let the medical communities and society as a whole including families to ignore those who are chronically and not acknowledge how sick they really are.
I am not blaming those who neglect, ignore or add burdens on the chronically ill only but the blame also goes to the chronically ill often times because we try not to burden others with what we are enduring. When we do get criticism for what we endure we easily just go back to hiding it believing it will make us less of a burden on others. We go back to trying to pretend like everything is ok in the mean time it is causing our health to decline because we are fighting very hard to appear to be somewhat normal and functional. In doing so we are doing a disservice to all those who are chronically ill because we continue to let the medical communities and society as a whole including families to ignore those who are chronically and not acknowledge how sick they really are.
One thing I have not recovered from mentally is the isolation I now feel. I no longer seem to have anything in common with anyone because becoming chronically ill taught me to enjoy the simple things in life and taught me to appreciate keeping life simple. I no longer enjoy watching TV, movies or the many other worldly things they are distractions that take from true happiness. I also feel isolated because I feel in my heart I could never count on those I trusted to be there for me. It has seemingly distanced me from them. I still love them deeply but feel when things get tough they are going to put their own interest first no matter what the cost is to me or others. This has caused me to mistrust most farther isolating me. I still try my best to let love guide all I do and I love others deeply but do not have the confidence they will be there for me and I am pretty certain I would be on my own like I was when I was chronically ill. It would take quite a bit from those who let me down to convince me I could count on them and trust them. I would have to see in their actions they understand what I endured and what I am still enduring as I continue to recover. Also those scars of them letting me down will remain. I have forgiven them but I am not confident that even in their actions they are wholeheartedly going to be there for me. I know I am somewhat selfish but I always gave everyone my all and thought when I was down and out they would be there for me. The fact that they were not and actually did the opposite had made me lose any confidence I have in them and it most likely will not be restored because I still see in the things they so and do towards me they do not fully understand what I endured and how it has changed me mentally , financially, and even physically. They further isolate me by trying to compare their health issues to mine and I came very near dying a few times. I cannot see how they can compare achy joints or a burning stomach to the complete failure of my body and being very close to dying. It further shows their lack of even caring or being interested in what I had to endure. It feels as if they are down playing what I endured and even insulting my intelligence.
From a mothers perspective they may want to give up because the pain is so severe and their bodies are struggling to function. They feel guilt for not being able to be there for their children mentally or physically as they would like. They feel guilt for wanting to give up because if they died who would take care of their children. Who would make sure they remained healthy. What if they suffered from the same illness, who would guide them through it. The mothers know that no one would love and care for their children like they do. They want to get healthy because they know no one will keep the children as safe as they do but the mental , physical and emotional aspect of being chronically ill are so overwhelming that it is a struggle to go on each day.
For those who have a loving father , the father worries about who would take care of the children while he provided for him. He would be very aware no one would love and nurture them like their mother would.
Sadly I have seen the opposite occur. While a parent is struggling to maintain their health the spouse offers very little help or support. This further increase the mental, emotional and physical stress causing the parents health to decline even more.