In the age of COVID-19, there are a lot of people who were healthy before their infection and who now have a chronic condition of some kind. Maybe it’s long-COVID, but maybe it’s damage to the heart or lungs. Maybe they now have an autoimmune disease triggered by the virus. Regardless, there are now a lot more people who are asking themselves, “Do I have a chronic illness?” 

And this doesn’t take into consideration all the people who recently developed or were diagnosed with a chronic illness not connected to COVID! Maybe you fall into the group, and you’re asking yourself a similar question. 

If you recently developed a chronic condition of some kind or were recently diagnosed with one, this post is for you. I’m going to share a lot of things that you need to know if you’re a new patient. Not everything in this post will apply to you, but a lot of it will. No matter what, I hope this post helps you.

I am not a medical professional. 

This post contains affiliate links. Thank you for supporting Kate the (Almost) Great! 

Do I Have a Chronic Illness? What You Should Know If You’re a New Patient

I’ve talked before about chronic illness basics, so while I want to address specifically what chronic illnesses are in case you’re brand new to them, make sure to check out that post.

What counts as a chronic illness?

A chronic illness is an illness that is chronic. It doesn’t have a cure, although in some cases it can be treated and in even fewer you can go into “remission.”

Chronic illness is an umbrella term used by, well, everyone. Technically, though, you have either a disease or syndrome. A disease means your condition is understood and treatable and a syndrome means your condition is a collection of symptoms. So, as I understand it, your syndrome can’t be a disease and your disease can’t be a syndrome. But your disease and your syndrome are chronic illnesses. 

I have 7 chronic illnesses: rheumatoid arthritis, Sjögren’s syndrome, fibromyalgia, POTS, endometriosis, asthma, and chronic anemia. I also have the genetic condition tarsal coalition which isn’t an illness because it’s “just” that my body thinks there should be bone where there shouldn’t be in 1 specific place in my feet. 

If you have some sort of symptoms that you’ve been dealing with for weeks or months (or more), but you don’t have any idea what could be causing it, I can’t tell you if you have a chronic illness. If you have specific symptoms that sound like you have one of my illnesses, that I could give you an opinion on based on my lived experiences.   

Tips To Make Independently Living with a Chronic Illness Easier

Now that we’ve talked about what a chronic illness is, let’s talk about things you need to know as a new chronic illness patient.

You’ll need to stand up for yourself 

You might have to fight people, so be prepared to stand up for yourself. 

I don’t mean punch them; I’m referring to a more figurative fight. You might have to fight your doctor’s office to get them to believe you or to prescribe a medication you want to try. You might have to fight a professor to abide by the ADA. You get the picture. 

My best advice is that you should be prepared to fight and hope that you don’t need to do it. If no one needed to fight for themselves, then the disability rights movement wouldn’t exist.

You also need to learn the lingo that other people, in varying situations, understand. When it comes to doctors, for example, you need to be able to describe your pain in a way that they understand. Similarly, when it comes to teachers or school, you need to know the names of the laws that protect you and how exactly they protect you.

What Sjögren’s Syndrome Is: A Beginner’s Guide

If you think something is wrong but people are dismissing you, keep pushing 

This is very similar to the previous point, but this is specifically for people who are in the diagnosis stage. 

You know your body more than anyone else, including people with medical degrees. If you know that something is wrong and you’re being dismissed, keep pushing. 

It’s incredibly difficult emotionally; I won’t lie about that. But even if you’re 30 and you just started having symptoms, you’ve lived in your body for 30 years, which is longer than most doctors have been practicing. 

I had a lot of trouble with a rheumatologist who really wanted me to not have RA and refused to acknowledge that I had it. She was incredibly patronizing, but one thing she specifically said was how she had the medical background and I didn’t. 

Friends, I had been in pain longer since before she started college. She might have 4 years of college, 4 years of medical school, 4 years as a resident, and 3 years as a fellow, but I had been in pain since she was in high school. I know my body and my case better than anyone else could, including her. 

(Side note: she kept ordering tests because she wanted to prove that I didn’t have RA and the tests all proved that I have RA. She just really wanted me to not have it, I guess.) 

I hope that you don’t deal with someone like her, but it’s a good example of how you will probably need to press for adequate medical care. You are nowhere near alone if you have to do that, unfortunately.

Learn more about how to stand up for yourself – and the disability rights movement – in this post.

What’s Chronic Pain? What You Should Know If You Love Someone with It

Physical chronic illness impacts you mentally 

Living with chronic illness takes a toll on you, and not just physically; it is also hard on you emotionally. Your physical health can and will take a toll on your mental health. Mental health is like physical health in that it is a thing that everyone has, even though it wasn’t talked about a lot publicly until recent years. Or at least, it wasn’t a term used until recent years.

Everyone has mental health, but not everyone has a mental illness, if that makes sense. If you don’t have any physical illnesses or injuries, you still have physical health. Similarly, you don’t have to have a mental illness to have mental health.

A 2000 study found that “The emotional dimensions of chronic conditions are often overlooked when medical care is considered” (x). So while doctors might help your physical problems, they might not be able to provide support for the effects of those physical problems. 

The National Institute of Mental Health found that “People with other chronic medical conditions have a higher risk of depression” (x). Not to mention that some illnesses can cause changes in the brain that lead directly to depression (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 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 have a mental illness. Learn more in this post.

9 Ways To Advocate for Disability Rights

You’ll probably need to change some things about your life

Best case scenario, you’ll have to add some medical appointments to your calendar. But much more common is that your entire life will change. 

Here’s one way that this can look. A year after I was diagnosed with RA, 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. 

Additionally, I hate exercising and my joints do, too, but I’ve tried it for another one of my illnesses, POTS. And I did so because I wanted to know if that exercise regimen would help. It didn’t, but I’m glad I did because now I know.

(Side note: I know other POTS patients who have done that and similar regimens and it has helped them. It just didn’t help me specifically.)

Unfortunately, I have had to change my life in order to possibly feel better. You might have to do so, too. 

8 Essential Tips for Living with POTS

You should keep track of your illness in some way 

In the first 11 or 12 years of my symptoms, many doctors asked me to track my pain, and in recent years, doctors and other members of my medical team have asked me to do this if I develop new symptoms. 

Tracking your illness also helps you prove a couple of things. 

One thing is that you’re dedicated to figuring out your health. You would think that is obvious, but annoyingly it isn’t. But tracking your symptoms over a week or more shows dedication. 

Another thing it proves is that you are experiencing what you say you are. Some symptoms can be tracked by machines, but not all, especially not pain and fatigue. When I was in the process of getting my POTS diagnosis, I wore a holter monitor for 48 hours so there were 48 hours of heart rate data. But even then, I had to keep a journal of my activity over that 48 hours so we could connect activity with heart rate. I didn’t have to note everything I was doing, but when I was active, when I was sleeping, etc. 

Another thing it proves is that you are experiencing your symptoms as frequently as you are. It is easy for many doctors to say that we’re exaggerating how frequently or intensely we experience our symptoms. But we know that we’re not exaggerating, and one way to help convince others is to keep a journal of them.

Tracking your symptoms can also help you notice patterns in your symptoms. If you’re feeling stuck in figuring out what is impacting your symptoms, or you have no idea what is helping or hurting, tracking can help you see patterns that you’re not noticing in your day-to-day experience.

Finally, tracking your symptoms can help you figure out if a specific food or activity is impacting your symptoms. Basically, you’re trying to know more about what is causing, hurting, or helping your symptoms. Tracking them can help you figure that out.

If you want to learn about how to successfully track your symptoms and/or want free downloads to track your symptoms, check out this post. 

​​10 Ways To Find Fibromyalgia Relief

There are a lot of resources out there to help you 

Maybe you have a hard time finding them, but they’re out there. 

I can’t give you a ton of resources myself as it will depend on what your chronic illness is, but start with official organizations related to your condition. They can also help direct you to other resources.

If you found this blog post, then you might already know that patient advocates can help you. There are so many other chronic illness bloggers and creators out there, and if they can’t help you with what you’re looking for, they can probably direct you to what you need. 

And one way to find more resources is through other patients!

9 Arthritis Products That Help My Rheumatoid Arthritis

Other patients can help you in a big way 

If you’re looking for specific resources for your illness, other patients can help you find them. But they can also help you in other ways!

Other patients can also help you feel less alone, whether they’re people you knew before your chronic illness or people you met after. 

No one else gets what you’re going through. No one else has experience like patients do. 

They can give you advice for problems no one else truly gets. They can tell you what is something you should question and what is something you should push back on. That sort of thing.

So many people don’t understand exactly what life can be like for us, and while that’s fine in theory, it really can make you feel isolated. 

Don’t know anyone in real life who gets the chronic medical condition(s) life? Feel alone because you often don’t feel well enough to go to events? Social media for the win! 

Getting involved online has been super helpful. Looking for patients who understand your life? Search for people by using hashtags with your condition(s). For example, #rheumatoidarthritis #arthritis #fibro #fibromyalgia, etc.

What To Expect After Subtalar Fusion Surgery: A Patient’s Perspective

You’ll need to confront your own ableism, if “just” internally 

You might not realize it, but ableism is so entrenched in society. Once you recognize that you have a chronic illness, you need to deal with your own ableism.

And that is especially true when it comes to internal ableism, which is when you are ableist towards yourself.

This includes thinking that you shouldn’t use a mobility aid because you’re “not sick enough” or they’re for “real” disabled people. 

This includes telling a loved one that they shouldn’t feel lazy because they need to rest, but then berating yourself for needing rest. 

I won’t lie: it’s hard to address this. But you need to so that you can move forward in your new life. And one way you can start that is by cutting back on the ableism in your vocabulary.

Ableism is rife in the English language. (Probably other languages, too, but as I only speak English I can’t speak to that.) Honestly you never realize how much you use ableist words until you try to reduce or stop using them. 

Can Chronic Pain Go Away? What You Should Know

For example, the following words are ableist: crazy, insane, stupid, idiot, moron, cripple/crippling, lame, junkie, turning a deaf ear, blind to the situation, etc. 

What makes them ableist? It obviously depends on the word or phrase, but there are a couple of common reasons. 

One reason is that if it compares a bad thing to a disability, then it’s ableist. 

Another reason is the history behind the word. For example, did you know that “idiot,” “imbecile,” “moron,” and “stupid” were once used as different classifications of intellectual disabilities? (Source) So when you call someone an “idiot”, while it might not be as bad, you’re really doing the equivalent to calling someone the R word. 

It’s also important to know that you can be laterally ableist! Having a physical disability doesn’t mean it’s okay to use the word “insane,” for example. And the same is true for someone with mental illness but without physical condition to use the word “cripple.” I, as a cripple with anxiety, feel very strongly that it is not okay to say someone has “crippling anxiety,” for example. A personification of anxiety didn’t break my legs, crippling me. 

The language we use affects other people, even if we think that it’s harmless. Learn more about everyday ableism in this post, which goes into more details about, well, everyday ableism. 

Arthritis Diagnosis: Diagnosis Stories + The Diagnostic Process Explained

You’re still a chronic illness patient even if you don’t have a diagnosis 

It took me 9 years of living with arthritis symptoms before I was diagnosed. I was still an arthritis patient during those 9 years. Just because you don’t have an official diagnosis doesn’t mean you don’t have an illness.

There’s also a lot of privilege that comes from getting a diagnosis. It takes money, time, insurance, and other resources to get a diagnosis and push doctors to listen to you. 

You don’t have to have a diagnosis to be a chronic illness patient. And if you don’t have a diagnosis, but you’re reading this post wondering if “chronic illness” applies to you, then it probably does.

Life with Chronic Illness: One Patient’s Life with 6 Illnesses

What works for one patient might not work for you. That doesn’t mean you don’t have the condition.

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.

Making Friends as an Adult: 12 Tips You Need

Like this post? Share it! Then check out: 

6 Tips for How To Accept a Chronic Illness, Mental Health and Chronic Disease Management: What You Should Know, What’s In My Tool Box for Dealing with Chronic Pain, So Someone Healthy Has Given You Health Advice