When you're first diagnosed with a chronic illness you're doctor can tell you a lot. They can give you all of the stats. They can tell you all the known symptoms. They can tell you how to manage those symptoms. They can tell you most things. But they can't tell you everything. Here are 7 of the most important things I had been told.
1》The Spoon Theory
“The spoon theory is a self-pacing strategy that emphasizes the need for chronic pain patients to work to a certain quota...patients have to be economical in how they spread the use of their spoons in their daily activity” is what the Cleveland Clinic website describes it as.
Basically, you only get a certain amount of spoons for a single day. Spoons represent your energy bank. Each activity costs you spoons. Once you're out of spoons you'll need to replenish them, they can be replenished by doing activities that you love and that are considered self care.
This is such a good way to help people conserve and regain energy as well as to cope with only having a limited energy reserve by having a strategy to plan a day. For some, this is a necessary tool. Because of this theory, the chronic illness community has adopted the term Spoonie(s) as a way to refer to each other in a supportive way.
2》 Your whole life will change
The most challenging thing they don't tell you about is how your whole life will change. Everything you do will revolve around your illness. Your energy level and how much you can do in a day, things that you no longer can do, things you now have to learn to do, just everything. Now, you have to be your own illness expert. Learning about your illness, being your illness advocate, and in some cases teaching your doctor about your illness. It can be hard when you develop an illness, it's hard on the body and mind. All those things that you used to do but now can't weigh heavy on your mind sometimes and causes you to become depressed and that depression plays a role in how bad your illness is. And it's hard on those around you. Losing friends is common when you no longer can do what you used to. There's so much in life that can change due to illness that I could just go on and on!
3》 You grieve the loss of your old self
Grieving the loss of the person you used to be is common. Grieving the loss of the life you thought you'd have is common. To grieve these is a healthy way to come to terms with having a chronic illness. You have to change your life to accommodate your illness which can be hard to do. It can be hard to come to terms with things you can no longer do. This means you will have to go through a Grieving process of sorts. You may be alive but the you there was before illness is not here anymore. You can get angry at your body and what you can't do anymore, you can go into denial and try to keep living like the illness doesn't exist, you can become depressed at what your life is now, you can try to bargain with the universe. But in the end you'll have to accept that this is you now, that this is life now because there is no going back - only forward, trying to make the best life you can.
4》 Hobbies might change
When your illness touches every part of your life, it's difficult for your hobbies and interests not to change. For some who are active, illness can affect your ability to be active causing you to either change how active you are or stop you from being active in the first place. Lots of Spoonies (remember that term from the top of the post?) are creative people partly because of their limitations. With illness comes solitude from not being able able go out and keep up which leaves people needing to way to express themselves. Being creative through painting, drawing, crafting, writing, reading is a great way to express one's self that doesn't necessarily take many spoons and can bring joy. Lots of Spoonies will also run Facebook pages or websites to document their journey with illness. Sometimes on a online life is the only way a Spoonie has a social life. Having limitations on your body sometimes means giving up your social life so having that online presence is important for the mind.
5》 Your finances will never be the same
One thing about chronic illness is that your financial situation will probably change.
Doctors visits - gas, parking, food/drink, time off work, medicines
Hospital visits - gas, parking, food/drinks, time off work, medicines
Sick days - time off work, possible doctor or hospital visit, medicines
Medical devices - mobility aids, sleep aids, brace/splint, glasses, mouth guards
Comfortable clothing
Comfortable pillows for sitting and sleeping
Medicines
Loss of income due to having to quit a job/qualifying for disability checks
+more
Financials would be one of the first things effected by chronic illness. All of this turns living into survival. It's even harder when you live in a place that direct have universal health care coverage or you don'thave insurance. The financial pressure can crush you!
6》 Your social life will change
When you get diagnosed with a chronic illness a lot of the time your social life will change drastically. When your energy level is low and you don't have the spoons (remember from above?) to get ready and go out its common for your friend circle to evolve. A big thing people in the chronic illness community will say is "even though I'm going to decline to go out, please don't stop inviting me". This is because to really no fault of their own, people do get tired of us saying no or canceling plans which leads to spoonies not receiving these invites anymore. That's when friendships change or even end. It's hard for someone to keep up with the regular world with an illness.
It's also common for it to evolve to having lots of online friends and communities - be it Facebook, online forums, playing video games with people online, etc. When your sick with a chronic illness and home most of your time, you gotta get some kind of social interaction. Online gives that sense of having a social life without the strain of it. And lots of time, these places online you find yourself in can be an extremely positive thing. Illness support groups, friends from all over the world all from the comfort of your own home. It's no wonder so much of the world is online these days.
7》 You need to learn to advocate for yourself
Learning advocacy is not an easy thing. First off, you'll need to learn all you can about your illness. Second, you need to learn to not back down - you know your body better than any doctor and if you say there is something wrong, it needs to be investigated! In learing to stand your ground you'll need to learn how to do it in a polite way, in a diplomatic manner. You have to be respectful but you have to make sure you don't get walked on. So much of the time you'll know more about your illness than your doctor and you'll up teaching them about it. This is part of standing your ground, you know kind of test you need or you know about other comorbidities to test for or what specialist to see. The doctor may not be so willing but stand your ground, be respectful, and insist. Advocacy can go to many deeper levels depending on illness, situation, social issues, etc.
There are an infinite amount if things that the doctor never tells you when you're diagnosed with a chronic illness. Those were 7 things I wish I had been told!
Comentarios