While my condition has only been disabling for the past year and a half, I’ve technically had chronic illnesses my entire life. Even before being diagnosed, my illnesses affected my life greatly. Most people will want to hear that, despite my struggles, I make sure that I live every day to the fullest and I always find the silver lining in every gray cloud. Well, just because most people want to hear that, doesn’t make it true.
The truth is that I get tired. I’m not just talking about “need to take a nap” tired or even the full body aching of constant fatigue. No, this kind of tired is a general feeling of “I’M SO OVER IT” that is typically accompanied by a desire to shed myself of my illnesses and every bit of misery they bring with them. By reading posts from other spoonies in various support groups and such, I have come to learn that I’m not the only one who feels this way. So, I’ve decided to create a list of 8 things that spoonies are totally over.
I’m gonna go out on a limb here and say that every one wants to be validated. We want to know that our beliefs and experiences are recognized as true and valid by others. It seems to be a very natural part of the human condition.
For people with chronic illnesses, we want our pain and symptoms to be validated. We want to be believed. In the 30 years that I lived with an undiagnosed chronic illness, I had frequent injuries and was often sick. Every new injury came with people who would deny my pain. “There’s no way you can hurt yourself that often,” “you just want attention,” “you’re so dramatic,” “it’s all in your head,” “just get over it.” As I type out those phrases that I have heard a countless number of times, my throat begins to tighten up and my heart rate increases because these words kept me up at night for years. Believe me, after 31 years of being invalidated, I am over it.
This kind of invalidation is powerful. It seeps into your pores and affects how you see the world around you. You start to doubt your own sanity and learn not to share these parts of yourself with others. You try to hide away your pain and sadness. You try to swallow those parts of you deep down and lock them away. However, pretending your illnesses don’t exist won’t make your illnesses go away. Believe me, I’ve tried. And someone else pretending that my illnesses and/or symptoms don’t exist won’t make them go away either, it will only teach me that you are someone that I can’t trust to be myself with.
Representation is important. I’ve mentioned it before, and I’ll say it again, disabled people are not often represented in our media & entertainment. When we are present in media & entertainment, we are often misrepresented. Most movies, books, tv shows, etc., that actually show a disabled person (usually depicted by an able-bodied person) center around a main theme of a person overcoming their disability, choosing to risk their life or take their life because of their disability, or how altruistic the people who love those with disabilities are (cause we’re obviously all burdens to others).
Another popular theme is that people faking their disabilities, as with the ad in the picture and discussed in detail by David M. Perry. We’ve all seen the memes depicting a person who stands up out of a wheelchair with an accompanying snarky comment about “a miracle in the alcohol aisle” or something equally ill-informed. I use a wheelchair and I can walk. I can not walk far and I can not stand for more than a few minutes at a time, but yes, I can stand to get out of my wheelchair. Memes such as these reinforce the false notion that people who can walk just use wheelchairs because they are lazy or attention seeking or whatever. And don’t forget about the aptly named “inspiration porn” where a picture is shown of a disabled person doing something as simple as brushing their teeth and being labeled as brave for these actions. The underlying message to these posts is that disabled people are brave simply for being alive because if you had this disability you would kill yourself.
Misrepresentation is harmful. It harms all of us. It harms me when I see it because I am reminded that society expects me to prove my disability to them. It harms disabled people with invisible illnesses when strangers harass them for using a handicap parking spot or a motorized scooter at the store simply because they don’t “look” disabled. It harms disabled people with visible disabilities when society tells them their life isn’t worth living. It harms society when we refuse to acknowledge and validate the existence of so many disabled people. And, you know what, we’re over it.
3. Pain, Pain, and More Pain
Now, not everyone with chronic illnesses necessarily has chronic pain, but mental pain can be just as debilitating as physical pain. The whole chronic part of our illnesses means that they are ongoing. They are the equivalent of the Energizer Bunny of illnesses. Some people get periods of relief between the moments of pain. Some people have various levels of pain, but are always in pain of one kind or another. No matter how often the pain attacks happen or how long they last, we are over them.
For as long as I can remember, I seemed to bounce from one injury to another. I would also get bugs, viruses, and infections back to back. As soon as one illness or injury would begin to heal, another would swoop in to take its place. I once had strep throat 4 times in one year. This has only been magnified since becoming disabled by my illnesses. Every time I think I’ve got a handle on my symptoms, some new issue comes bubbling up to the surface to rock my world all over again.
As mentioned above, this often leads people to not believe me when I say that I’ve injured myself or caught some virus. The other effect it can have is that people become tired with hearing about my pains. I mean, shouldn’t I be over it by now? I am over it. I am sooooo over it. Unfortunately, that doesn’t stop my body from hurting. If you are tired of hearing me complain about my illnesses, imagine how tired I must be of living with them?
4. Missing Out
Recently, my daughter came home with a picture she drew of our family while she was at school. The picture showed her, Matt, and our dog all playing outside the house. Where was Mommy in the picture? I was a floating face smiling down on them from a window in the house. That picture crushed me. Even as I write about it, I start crying all over again.
I do a lot to try and stay present in my daughter’s life. I push myself to use up every spoon in my reserve on days when I know I can just so that I can soak in every moment of her childhood possible. But, I miss out. I miss out on a lot. I don’t get to take her to parties or play dates. I don’t get to run, dance, or sing with her. There are many things that I want to do with her that I just can’t.
I miss out with my friends as well. I have friends who live within 20 minutes of me that I haven’t seen in well over a year because I’m often too tired or in too much pain. I make and break friend dates frequently because my condition changes on a day to day, sometimes minute to minute, basis. I want to go on adventurous vacations. I want to have lunch dates with my friends that last for hours because we can’t stop talking. I want to be in a play, or take a class, or even just enjoy a hike through nature. Believe me, when people with chronic illnesses cancel plans or flake out, it’s not because we don’t want to see you, it’s because our bodies won’t let us. And, you guessed it, we’re over it.
The other day I was approached by someone online who was attempting to sell me some miracle cure or whatever, and you know what, I was honestly just about desperate enough to do it. I normally don’t buy into these pitches, especially from people I don’t know, but I was in a bad place and was tempted to try anything. Something the guy said sent red flags flying up for me so I started to ask him some questions. Pretty quickly his story began to unravel and he began pushing harder and harder for me to buy some of his miracle elixir.
He said to me, “I wouldn’t take advantage of a disabled girl.” Except, yes he would. As will thousands of other people. The fact that I am very open about my illnesses has also left me wide open for these kinds of exploitation. I have had people pitch just about every kind of juice, powder, oil, exercise, and supplement out there. I’ve read articles that boast to have found a cure to my ailments only to find absolutely zero evidence to support its efficacy. I get messages everyday from people who are eager to take what little money I have, and I am so over it.
I am over people looking at me and seeing money signs instead of a person. I am over people trying to take advantage of the fact that I am hurting so they can line their pockets. Chronically ill people are vulnerable to these kinds of attacks not because we’re not intelligent, but because many of us are so desperate to feel better. And yet, when we don’t try out the latest health craze on the market, we are branded as being too lazy to try to get better. Believe it or not, our illnesses do not exist merely for your monetary gain.
We are always waiting. We’re waiting for a doctor’s appointment, test results, medicine to kick in, medicine to wear off, pain to subside, the next flare, the flare to end, research, and cures. We also wait for people to understand us, to listen to us, to believe us, and to support us. The waiting goes on and on, in a seemingly endless stream. And, surprise, we’re over it.
Waiting for pain relief is one of the hardest things to wait for, but many of us do it every single day. For the past month, I have been waiting for pain relief and nothing I’ve tried has been working. I finally found a medicine that seemed to be helping, but in less than 2 weeks, the pain came back. Now I am waiting, again. Waiting for more relief, waiting for the doctors to take my pain seriously, and waiting for something to finally work. On top of all of this, I am still waiting to get approved for disability benefits so that I can stop worrying about money every second of every day. I am so tired of waiting. I am ready for results.
Chronic illnesses are isolating. They just are. No matter how many supportive friends and family members you may have, there will always be some feeling of isolation. There are parts of your illness that you can’t share with others, no matter how understanding they are. I am a pretty decent wordsmith, I like to believe, but I still lack the ability to fully explain the weight of my pain, fatigue, sadness, and loss.
I spend most of my time in my house. Lately, a good portion of my time at home has been spent in bed. If I leave the house, it is usually to go to the doctors. Occasionally, I am able to get out to see friends or family. My ability to leave the house is especially hindered by the heat of summer. This only adds to the feeling of isolation. The world keeps on spinning outside my window but I only get glimpses and snippets of it through pictures and stories from others. I wish that I could break through the shroud of isolation, but I have yet to find a way. And, yes, I am over it.
Yes, I’m a fighter. I fight every single day of my life. In my article 5 Ways I Fight my Chronic Illnesses I detail some of the various ways that I fight, so I won’t go into too much detail here. Just know that I am over it.
I have been praised for my strength and bravery in the face of adversity, but to me it doesn’t feel like something worth praising. See, I don’t feel like I’ve ever had a choice in the matter. To me, to live means to fight. Even when I lay around in bed all day, I am fighting against pain or fighting to get some sleep. To exist is to struggle, that is the life I have known.
And I am tired of it. I am exhausted from the constant fighting. I don’t mean that to sound like I am tired of living or existing. I just wish it were possible to clock out of the fight. I would love to be able to take a vacation from my illnesses, to be able to go even just a day without having to think about medicines, salt, fluids, compression, pain, or spoons. But, my body doesn’t work that way. I don’t get that option. So, even though I am so tired of fighting, I still fight.
Having chronic illnesses is tiring in so many ways. If you are a fellow spoonie, know that you are not alone in these feelings. If you are a loved one of a spoonie, I hope this list helps you to understand us a little more. As always, I’d love to hear from you. If you feel that I’ve left some important things out, leave me a comment and let me know!
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