Day 5: How does being chronically ill make you feel?
It’s important to understand that being chronically ill has more than just a physical effect on a person. In addition to physical effects, chronic illness also has an impact on you emotionally, and socially as well.
Physically: Being chronically ill makes me, and just about everyone with chronic illnesses feel tired. What would take no time or energy for a completely health person to do, often zaps all the energy out of a chronically ill person. Getting out of bed, taking a shower, cooking (if you can eat), taking up medicine/setting up infusions, going to doctors appointments, going to the library, spending time with friends, going to parties, etc., all take energy when you’re chronically ill. This leads perfectly into something I was talking about yesterday: The Spoon Theory. Again, you can see the spoon there here, but I will explain it here as well. The spoon theory has become quite ubiquitous in the chronic illness community, as a way to explain living with chronic illness to a healthy person. Very basically, when you are chronically ill, you have a finite amount of energy to use on activities in any given day. This energy is represented by spoons. Each time you perform a task, even as simple as getting out of bed, use of some of this energy (lose some spoons). Once you use the energy/lose a spoon, you can’t get it back. Another physical effect often experienced with chronic illness is brain fog. Brain fog includes the following symptoms:
- “Having a hard time recalling names or numbers or remembering simple things like where you put your keys (poor memory recall).
- Difficulty speaking smoothly or clearly.
- Feeling spaced out or stoned.
- Feeling “out of it.”
- Mental confusion.
- Difficulty thinking clearly.
- Lack of focus.
- Mental fatigue.
- Cloudy brain
- Poor mental stamina and concentration”
The aforementioned symptoms, and a more in depth explanation of brain fog and chronic illness, go here!
I experience brain fog on a daily basis. Forgetfulness is my most common experience with brain fog, but I have experienced all of the above, and probably others not listed.
Emotional: As one can imagine, being chronically ill at any age is very difficult to process and deal with emotionally. Unfortunately, this leads to physicians often attributing your medical symptoms as psychological symptoms. It is not uncommon to experience depression, helplessness, hopelessness, anxiety, frustration, resentment, guilt, irritability, tension, stress, anger, and I’m sure many more emotional effects. When I first got sick, I thought I was going crazy because no one could figure out what was wrong with me. When I was diagnosed, I had a brief moment of relief knowing that I was not crazy. This was quickly followed by grief about how my life had changed so quickly. For the most part, I am coping better with my illness now, than I was in 2011, but like everyone else, I have my bad days. I’ve been sick for 6 years, and I still have moments where I experience guilt, irritability, stress, depression, and anger. I used to think that these feelings were stupid, that I “should” be able to deal with them. I now recognize that these feelings are just part of the process of dealing with a chronic illness. Instead of telling myself that I shouldn’t feel a certain way, or that I should be able to deal with my illness without feeling an emotion, I tell myself that these feelings are a valid part of the coping process. Just because I feel this way now, doesn’t mean I will forever, and also doesn’t mean that I am unable to cope with my illness. I also have an amazing support system (even though some days it doesn’t feel like it), and have many coping mechanisms. I play video games, paint, and draw primarily as my main mechanisms of coping.
Socially: Even for the most introverted of us, being social is a part of human nature. Chronic illness can play a major effect on friendships and ones ability to be social. Often myself and others with chronic illness have to cancel plans with friends, and events due to their illness. This can put a major strain on relationships, and honestly leads to isolation. Thankfully, a lot of the friends that I still have are very understanding of my illness and my constant need to change/cancel plans. They are willing to come to me, and do things at my speed instead of theirs. That hasn’t always been the case though. I’ve had friends get mad and frustrated at my inability to keep plans and spend time with them. I can explain for days, but chronic illness is one of those things that you can’t get it until you get it, if that makes sense. While I was certainly frustrated with these friends, a part of me understands how difficult it is to understand why a 27 year old can’t do what normal 27 year olds can do. I moved in October, and that has honestly played a major rule in my ability to be social and feel less isolated. I live in a building with other people who understand the limitations of chronic illness, and also in a location that allows me to see family pretty much on a daily basis. Additionally, I have developed quite a large group of gamer friends and online chronic illness friends, that allows me to socialize with people with similar issues, interests, or both, on a daily basis as well.
I guess the take home message from this blog is that chronic illness doesn’t just effect a person physically. It has a wide ranging effect on a person.
Thanks for reading and lots of love,