You’re tired. You’re exhausted. You try to stay still, to close your eyes, but there is no quiet, rest, or even relaxation. You’re frustrated. You’re angry. You just don’t know at whom to direct any expressions of those feelings. You’re sad. You’re hurt. You cry but shed no tears and yet shed tears without crying. To scream or to whisper makes no difference. You really can’t tell if you are coming or going. Reality and an ongoing continuing nightmare have meshed into a single element.
Are you sick? Are you injured? The answer to either question is no. You are in this condition because someone dear to you suffers from a chronic or invisible illness.
Frequently, and from people with good intentions and kind hearts, you hear the questions of what is wrong with him or her. What did the doctor say? Often you then listen to that person explain that they experience that type of condition as well or they know someone who suffers from the same thing. They are not trying to sound uncaring or condescending. It’s just that if you think you know what it feels like then you really don’t because not thinking exists in the world of which you became an unwilling part. It’s all reaction and action in an effort to stay afloat or to not slip from that slope.
Unfortunately others do not have good intentions or kind hearts. Their statements are not rooted in naïveté or hopes of striking a kinship. For any of a seemingly endless multitude of reasons they are trying to establish their own superiority at your expense. It might be an MD who transfers a failure in not knowing a cause, treatment, or even recognizing a condition from him or her as the medical professional to the patient. How many times have you heard the phrase “problem patient?” Sadly, “problem” could mean only that the patient is not responding to any prescribed treatments and not that the patient’s attitude or desire for relief is a problem. It might be an employer or supervisor who refuses to accept that you or the loved one is suffering from a medical condition which affects the amount and quality of work performed to varying degrees.
How often are you told by people in those categories that you do realize that he or she does not look sick? You are too close to the situation to recognize the truth. If you don’t believe that listen about Uncle or cousin “Billy” who had the same problems or all those problems “Mary” who is branch manager at the bank or the Dean of the College of Arts and Sciences had. Mary did go to counseling was on medication for Depression while Billy merely needed to be forced to get himself out of the house and involved again with other people. You are just too emotional or overprotective and don’t understand that the person you see decaying and crumbling is actually an expert con artist.
Of course that’s the answer. They are a con artist. Who wouldn’t want to transition from active, productive, and happy lives to one where even the simplest of actions always taken for granted have become mountains to climb? What type of con artist would state that their greatest accomplishment was merely being able to sit up for 5 minutes? To tie their own shoelaces? To have the strength and endurance to walk from one side of the house to the other without assistance? To be able to chart a period of time less than 24 hours in duration where they have not vomited from nausea or dizziness?
That sufferer of an invisible or chronic illness must be a con artist. I mean they look OK to others who see them for only a few minutes. In those few minutes with you they might not complain or champion what would seem as petty accomplishments. My problem is that there are not enough minutes in the day for all the fun I want to have. I don’t know how to manage my time or have the ability to read someone else.
Of course I have my explanation of why I’m wrong about me and my loved one and you are correct. It might not be physically or even mentally, but emotionally I am with that sufferer of a chronic or invisible illness 24 hours a day and 7 days a week. There are no vacations or time off. I did not seek the responsibility or stress. Nobody tries to suffer from a chronic or invisible illness. I would not wish the position of caregiver for someone with a chronic or invisible illness on my worst enemies. Given the stress and the toll of being only a caregiver, I can’t even imagine what the stress and complications are from actually having a chronic or invisible illness. That would not be a strange or bad admission except I’m with someone in every way imaginable who endures such a condition 24 hours a day and 7 days a week.
Chronic and Invisible Illnesses can happen to anyone. Many people you know may have such a condition to which you and others are completely unaware. As a child, I watched my Mom suffer as I was in the role of caregiver for a parent. As an adult I went from working 60+ hour weeks, still having the endurance to run 10K races with only a couple of weeks notice to train, and easily benching my body weight plus an extra 75 pounds to needing assistance to walk across a bedroom. My wife took on that role of caregiver, and I was honestly too sick to notice the physical and emotional toll that role had on her even though I had experienced that caregiver role in my own life. In my case, I will make a full recovery. It’s been almost 6 years from when my life changed and 4 years since I was bedridden for a year. Still, my progress has been light years and while patience is trying, my appreciation for the simplest things in life are no longer taken for granted.
The role of caregiver and individual with a chronic or invisible illness is not easy. The path traveled has many pitfalls and obstacles. Often you find yourself sinking in quicksand or in the swamp marsh. Often it feels like you have been caught in a rip current out in the Gulf. At times you might want to yell at the other person. At times you just want to cry. Whether yelling or crying together or separately depends on the particular moment and often the needs of the caregiver at that moment are different from that of the one with the condition. Still, if you can look beyond the immediate. If you can keep the finish line in mind and deal with whatever is happening at a particular moment you will not just survive but can actually thrive. It’s an experience that nobody will ask for. It is an experience, however, that if forced upon you may and can help you grow in ways which you could not have imagined possible before living the moments.