The CDC says that 6 in 10 Americans have a chronic disease, and 4 in 10 have two or more (x). That’s approximately 196,920,000 people with a chronic disease, and 131,280,000 of that have with two or more diseases. That means that basically everyone in America knows someone with a chronic disease. But we’re not going to talk about the people who know someone with a chronic illness – we’re going to talk about the impact of chronic illness on an individual. By that, I really mean the ways that chronic illness impacts life beyond the illness’s symptoms.
As always, quick reminder that I’m not a medical professional. These are notes from my experience, and I always cite my sources when applicable.
Before we get into the real meat of this post, I want to go over what counts as a chronic illness. Chronic illnesses “are ongoing, generally incurable illnesses or conditions, such as heart disease, asthma, cancer, and diabetes” (x). Essentially, because there’s no cure and no reason to think they’ll ever go away, they’re chronic illnesses. This is different from a condition like a bone deformity, which would be a chronic condition. For example, my ankle condition is a chronic condition, as my ankle didn’t form correctly it isn’t healthy, but it’s not an illness that needs regular maintenance like my rheumatoid arthritis is.
That being said, let’s talk about how chronic illnesses affect people beyond the illness itself.
The Impact of Chronic Illness on an Individual
Spending time convincing people that you really are ill really affects you – I don’t worry about this too much now because I don’t really care what most people think of me, but that hasn’t always been the case. Sometimes, I would feel a little paranoid that internally people are rolling their eyes and going, “Sure, she totally isn’t up for going to this event. But she could go to that other event, so she’s fine.” If only it worked like that! But it doesn’t. Just because I could go to something on Saturday doesn’t mean that I can still go to something on Sunday. Similarly, I do actually need to sit instead of stand, board planes early, use a cane sometimes, etc. We’re not faking our illnesses just because you can’t see it. But if everyone clearly doesn’t believe you, you’re bound to sometimes ask yourself, “What if I am faking it? What if I’m faking it to myself?”
Many chronic illnesses aren’t clear by looking at someone, which makes convincing people harder – As the folks at Invisible Illness Awareness Week figured out based on data from the 2002 US Census Bureau, 96% of people who live with an illness live with an invisible one, and 73% of people who live with a severe disability do not use devices like a wheelchair. This means that when you look at them, you wouldn’t know that they’re disabled. So how can you tell if someone is disabled? Often, you can’t, so if someone says that they are, you need to take them at their word. People frequently give me dirty looks for parking in an accessible parking spot, which is so hard to experience. But I’m not going to get into arguments with everyone who gives me dirty looks!
So you were diagnosed with a chronic illness: what you should do next
Even if people believe you, they can think negatively of you because they don’t think you’re trying enough to be better – No two patients are the same, although we may have similarities. So just because you know one person with a certain illness doesn’t mean that you know everything that a particular patient goes through. For some people, natural methods may help ease some or even most symptoms for some people, but that’s not going to be the case for everyone. I know people with the exact same illnesses as me and we have completely different responses to treatments, both medicinal and natural. But even though we can know that logically, it doesn’t feel good for people to think that you’re not trying enough to feel better, even if you know that you are.
Your mental health can suffer as a result of being chronically ill – Imagine that you have an illness that will never go away. In addition, it costs thousands of dollars a year to treat or to pay for things that you need because of that illness, and you may or may not have that money to spare. You also have to spend too much time at doctor’s offices, which might make your job unhappy with you. That is, if you’re healthy enough to work. Your family and friends may or may not stick by you in your illness, and if they do stick by you, they might not be very nice to you about it. As you have probably figured, that doesn’t set you up for very good mental health. Even if you don’t develop a mental illness, you will definitely have times when you’re down in the dumps, sad about your health, frustrated with the world, anxious about your future, and more.
A 2000 study found that “The emotional dimensions of chronic conditions are often overlooked when medical care is considered” (x). Basically, “Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health” (x). So when doctors give help for physical problems, they might not be able to provide support for the effects of those physical problems.
Living well with chronic disease during the holiday season
The National Institute of Mental Health found that “People with other chronic medical conditions have a higher risk of depression” (x). Depending on the illness, some illnesses can cause changes in the brain that lead directly to depression (x). Some other ways that this might happen include depression triggered by illness-related anxiety and stress, a recent illness diagnosis, or even from medications (x). Frustratingly, “Research suggests that people who have depression and another medical illness tend to have more severe symptoms of both illnesses” (x).
The gist of it is that chronic illness is a risk factor for mental illness, along with family history, traumatic experiences, stressful life experiences (which chronic illness could be included in), using illegal drugs, and lack of social support (x). Because of this, it’s important that we chronic illness patients and the loved ones of patients take care of our mental health, whether or not we already have a mental illness diagnosis.
Chronic illness and mental health
You can end up being (or feeling) isolated – Being stuck at home (especially right now with COVID) means seeing people doing fun things without you. Social media is wonderful in that you can still keep relationships with people without having to be in person, but it does cause massive FOMO. I personally don’t necessarily feel isolated, but that’s definitely because I live with my family, so you should know that it happens. Talk about other ways to contribute negatively to mental health!
If you have an autoimmune disease, you have to suppress your immune system, which makes you more susceptible to infection – It is so stressful to adjust to having a suppressed immune system … and that was before COVID-19. In autoimmune diseases (such as Crohn’s, rheumatoid arthritis, and MS), the immune system is too active and focused on trying to destroy the body. This can only be prevented by medications that shut down or severely compromise the immune system. Not only does this make us more susceptible to getting sick, but because we’re immunosuppressed, when we get sick, we get it worse than everyone else because our immune systems can’t really fight it.
5 items every immunosuppressed person needs
It is SO hard to accept that your life is now forever different – For a while after I was diagnosed with rheumatoid arthritis, I was convinced that if I just found the right medication, I would be 100% pain-free and symptom-free. That wasn’t the case. and I had a really hard time accepting that. But accepting it isn’t a process that can be sped up, and it’s an upsetting thing. Cut yourself some slack, and if you can afford it, see a therapist who can help you through it.
Accepting your body with chronic illness
It’s very frustrating having to massively change your life in order to feel better – A year after I was diagnosed, my first chiropractor in Maine suggested that I cut out gluten and dairy to see if my arthritis was affected by eating it. The short version is, yes, my immune system hates them. Then I went through this again in 2015 with corn, soy, and egg and found out that these also anger my immune system. For me, when I eat them, my immune system attacks my joints. If you have an autoimmune disease, you might also check out the autoimmune paleo diet, at the very least to see if it’s something that can help you. Additionally, I hate exercising and my joints do, too, but I’ve been trying it for another one of my illnesses, POTS. And I’ve been trying it because I genuinely don’t have any other options. So it absolutely sucks that, between exercise and food, I have to change my life in order to possibly feel better. I don’t know if exercise will improve my POTS, but I have to still try it for months in the hope that one day I’ll feel better.
Lifestyle changes I’ve made for my rheumatoid arthritis
It’s scary not knowing what’s going to happen to you in your life – Obviously none of us know what’s going to happen in our lives, but that is especially true if you have a chronic illness. You don’t know if there will be advancements in research or if your illness will get worse over your life, and just how bad it will be. You don’t know if you’ll ever have a family. You don’t know … basically anything. And that’s so scary.
How has chronic illness impacted you?
Like this post? Check out:
We Need To Talk about Ableism, Traveling with an Invisible Disability: Dealing with Rude People, Examples of Ableist Language in Everyday Life, How Arthritis Affects the Body
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
You’re writing about such, at the first glance, obvious things but apparently many people still don’t understand a lot about so-called ‘invisible illnesses’.
Thank you for spreading important information!
Of course! About 5 or so years after I was diagnosed (14 after symptoms started) I posted on Twitter throughout my day every time my illnesses impacted my day and I stopped by evening because it was so demoralizing, but it also opened the eyes of a lot of people on Twitter. It’s the sort of thing were we patients know that it impacts our entire lives and we think it’s weird that people don’t realize that, but they don’t!
It’s really interesting as are all your posts, but at the weekend I was asked by a neighbour how my illness affects me, other than walking dodgy the majority of mine is internal. so when I handed a neighbour so incontinence pants she said well you can’t need those, so I described to her just what goes on inside me, I could tell she was shocked by what I said. I have often thought the odd one or two of them looks at me as if there is nothing wrong with me, which is tough when you live in an older peoples community.
That makes total sense! I feel so self-conscious when I use a wheelchair at the airport or somewhere where continued walking is required, especially if I’m not in a cast. But even when I’ve been in a cast, people think I just broke my foot or something. Nope, arthritis damage + miscellaneous other problems!
Kate, thank you for sharing! I worked at a non-profit for many years and the first step is always educating people so they can fully understand the impact of living with chronic diseases’
I love this! Thank you.