I Don’t Want to Lie Down
By Melissa K. Vassar-Belloso
There are a lot of activities that have negatives to them but very often sleep isn’t considered one of those. Naps are considered a break for many of us or a chance to refresh. Sleep is something we do to recharge and when we do it correctly we’re told it’s a necessary part of a healthy routine. But what about when sleep isn’t something we look forward to? What happens when sleep becomes something we resent and lying down becomes part of a punishment? Today we’re going to explore when sleep goes from being a refreshing activity to becoming part of the invisible prison that is chronic illness.
Suffering From an Invisible Epidemic
Millions of people suffer daily with conditions that can’t be seen by the naked eye or even sometimes fully understood by the medical community. As human beings, we are heavily conditioned to be more convinced when we can see proof of something. Because of this a lot of medical conditions just don’t get the attention or consideration they need. Even while statistically quite a few people are suffering from them, the conditions don’t have overt or visible signs to them. This makes them harder to diagnosis and even harder to explain to others.
So what are these invisible conditions? You might be surprised how many things fall into being invisible. Mental illness commonly falls into being invisible but also things like autoimmune,blood,and intellectual based disorders. These are things a lot of people suffer with that don’t have very obvious visible markers. Because of how much stress humans put on seeing to believe it makes conditions with no physical markers,tangible symptoms,or obviously visible treatment methods harder to understand and relate to.
I’ve personally dealt with this sort of issue most of my life because a lot of my medical problems are ones that you can’t necessarily see. They’re conditions that affect my blood,my nerves, and my brain but they have no outward physical manifestation or just not ones as noticeable as a physical injury or deformity. I will never have a physical scar,need a cast,or develop any alarming symptoms that will stand out but I’m definitely and very seriously ill. Unfortunately, I suffer silently most of the time like a lot of people because I know most of my medical conditions won’t be taken seriously. They aren’t things people can see and as a result they won’t take me as seriously and possibly not even be able to relate to what’s going on with me.
But what’s even harder to convey is the cardinal source of frustration with chronic illness and that’s the gradual resentment you gain for lying down. For some, it can be difficult to comprehend what the difference between being sick and being sickly. A relatively healthy person will definitely have a sick day here and there but they’ll get over it. When you’re sickly it’s a completely different scenario. Being sickly means you are in effect always sick. Functioning and accomplishing tasks becomes a determination of how sick you are and not whether you’re healthy or sick. I’m personally always sick to some degree whether it’s pain,gastrointestinal,respiratory or otherwise. It’s very hard for me to remember when I wasn’t feeling at least a little sick in some way.
However, for a lot of us suffering chronic illness you have a much lower quality of life and a much more antagonistic relationship to your bed. A lot of invisible conditions have fatigue,anxiety,or pain as a bedfellow and as a result many people dealing with chronic illness sleep or at the very least are in bed a lot. This isn’t always a choice. You might be lying down because of an invisible emotional or mental issue. You might be too stiff and in pain to even leave your bed. You might just be too physically weak and sickly to get up. Whatever the reason, chronic illness usually means you see your bed a lot and it can become a deceptively comfortable prison over time. I know personally there are a lot of times I don’t want to lie down but I don’t have a lot of choice in the matter because I’m just not well enough to be up and moving around.
But as is the case with most things, the first steps to improvement in our society for chronic illness sufferers is understanding. Next time you encounter a person who doesn’t look sick to you or you have a person close to you spending a lot of time in bed,take that first step to understand they may not be lazy. They might be sick. Taking that time to understand a new perspective and get the whole picture can be a big step toward understanding and possibly helping one of the many people in our world suffering silently.
Developing an Outlook for the Future
Being positive can be a hard sell when you suffer from chronic illness. As opposed to that sense of relief when you get over a cold, the feeling of knowing you will wake up sick every day for the rest of your life can be a heavy burden to bear. It can come with it’s own sense of anxiety and depression as well as significantly lower your quality of life. Those of us who suffer with chronic illness still want to do things,go places, and enjoy life but are otherwise not equipped to fully do so. You feel limited because you are in a lot of ways limited.
But even more disappointing, when you already have that to deal with, is the limited acceptance you get from society. When we as a society discount an invisible condition we in turn discount the person suffering from it. It makes those people feel like lower class citizens not worth your consideration. It makes them feel guilty for being sick and afraid to open up to others. The feeling of not being welcomed or understood resonates and eventually builds negative feelings.
While there are certainly things the medical community can do to change this outlook and even things that person can do for themselves, the world they’re trying to be a part of needs to also become a little more considerate to close that circle. As people, we need to stop making other people feel ashamed to be who they are and when you suffer from chronic illness, your conditions do become part of the package. It’s not reasonable to expect a person dealing with chronic illness to separate themselves from their condition because it’s not something that they can make go away,control, or ignore.
When you have a medical condition that you know you’ll wake up with every day and essentially have until you die it can be near impossible to put it aside or not tailor parts of your life to it. You can definitely find silver lining but no amount of that silver lining will make you truly healthy. This makes getting out of bed that much harder because it becomes more difficult to see purpose in getting out of bed.
What can bring hope for those people is a world that makes more effort to understand and respect them. Learning as a society that chronic illness isn’t something people choose but is something that makes their live difficult can be a big step to making ourselves more open to really welcoming those people and understanding invisible conditions as a whole. No person suffering from chronic illness is expecting you to see their condition in the traditional sense of that word but rather that you make an effort to see them as a person and understand their experiences. In effect,we all have something and when it comes to being sick a person dealing with something you can’t see is still a person struggling and deserves as much of your time,compassion, and respect as a person with a cast or that flu that’s been spreading around the office.When we respect each other and reach out, we create hope and strengthen the base bond of humanity we should all have with each other.
How Can I Help?
Often when we have a person close to us in pain or peril we want to help but it can be hard to know what the right thing to do for them is. When someone we know is sick, a common first instinct is to think in terms that they’ll feel better soon or that the thing afflicting them is temporary but that’s not the case if the person is dealing with chronic illness. The sentiment to tell someone you hope they’ll feel better soon isn’t wrong. It’s a common sentiment in our society. But if the person is dealing with chronic illness it can be a short-sighted approach.
In the many steps our society needs to take in understanding chronic illness,we need to take efforts to understand the nature of it. When it’s chronic illness the person is dealing with, your first step is make a genuine effort to understand that it won’t go away. Understanding the impact it has when a person is always sick,in pain,anxious, or tired will give you the proper gravity of the situation. The person most likely already understands that gravity and isn’t expecting you to understand 100%. They already know kind sentiments won’t change them waking up sick. What you can do for the person is support them in other ways. If the person has a physical issue,offer to help them do some of the tasks that are challenging for them because of their pain. If it’s mental,learn to give them space and support for their anxiety or depression. If it’s an autoimmune condition,make an effort to learn about the condition and approach with an understanding the condition is unpredictable in nature. Making an effort to understand people is a huge step we don’t always take but when you take time to try to honestly and openly understand another person’s perspective it will leave an impact.
Don’t make unfair assumptions about the person but in the same strain don’t insult them by approaching with pity. The people who get up and live life with chronic illness aren’t weak or pitiful. It takes determination and strength to get out of bed when everything hurts or you’re riddled with anxiety. It takes grit to drag yourself through day-to-day tasks when your body feels like it has the integrity of a spaghetti noodle.It takes courage to step outside under the weight of social anxiety. Dealing with chronic illness isn’t something the people who have it want and usually not something they chose but it is something that makes them stronger people because you have to fight for the time and experiences you have. The most important thing you can do for the chronic illness sufferer in your life is respect them. Treat them like people,help them if they need it, but understand that at the core of that suffering is true strength. For every day that those of us who suffer with chronic illness are bedridden or lower in productivity, there’s a day where we’ve climbed mountains and made discoveries you can only encounter from seeing rock bottom first.
There are more things at play in our world than what we can see with our eyes. Next time you encounter a person dealing with chronic illness, take that step to keep this in mind and try to understand that even though you can’t feel their anxiety,relate to their sickness,or feel their pain that they have a condition that is just as real as any other medical condition. The more we learn to see with our hearts and not our eyes, the more silent sufferers can begin to find trust and support in the community around them and take steps to living a better life where they don’t have to suffer in silence or feel like less of a person.