Living life with chronic illness is hard. This might feel obvious, but it’s still harder than most people realize. We have so much to stay on top of – taking all medications, doing the right amount of exercise without overdoing it, eating a special diet specific to our health issue(s), working while our bodies are constantly doing illness things … I could go on forever. But in this post, I’m not going to try and address every single thing we have to deal with. Instead, I’m going to talk about common problems we have and I’m also going to over some solutions.
As a reminder, I am not a medical professional. I have lived with chronic illness for over 19 years and use that experience to write blog posts like this one.
Problem 1: Keeping Track of Everything
A little-known part of living with chronic illness is how many appointments and how much information we deal with. I already knew that, but it was super reinforced when my rheumatologist went to private practice outside of Massachusetts General Hospital, or MGH. When he was at MGH, he could easily see all of my blood work results ordered by my other doctors, all of my testing results, and even all of the notes from my other MGH doctors. I had no idea how good I had it when all of my doctors were at the same hospital!
Some solutions include keeping a simple document with key information, downloading files from key appointments and storing them in an organized way, bringing someone with you to key appointments, and more. This is a free version of the document that I personally keep and have since 2010. It has a medication list, surgical history, family medical history, and more. I keep a copy folded in my wallet at all times, and my parents have a copy of it, too. Just in case.
How To Manage Your Medical Information As a Chronic Illness Patient
Problem 2: Understanding What Impacts Your Illness
You would think with the Internet it would be easier than ever to understand our bodies. And to a certain extent, it is. But there’s so much nuance to living with chronic illness and the Internet has so much information. And at the end of the day, even if you get clear answers from reputable sources, every single chronic illness patient is different. How do you understand what impacts you specifically?
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. Let’s say that you are all out of things doctors can do to help you; maybe your doctor can’t prescribe another medication for your symptom, or you can’t afford a therapy or treatment. Basically, you’re trying to know more about what is causing, hurting, or helping your symptoms. Tracking them can help you figure that out.
Here is a 4-page symptom tracker by yours truly. It’s straight-up free; no signing up for my newsletter or anything else. This document is 4 pages:
- Page 1: Pain (1-10), 1 word to describe it
- Page 2: Fatigue (1-10), hours slept at night
- Page 3: Pain (1-10), hours slept at night
- Page 4: Pain (1-10), foods eaten
Why You Must Track Symptoms of Your Chronic Illness + Freebie To Help
Problem 3: Ableism … Ableism Everywhere
There are two basic types of prejudice: overt and covert, or obvious and implied. When it comes to ableism – or the discrimination against disabled people – the vast majority of it is implied. And part of this is that ableism hasn’t been talked about a whole lot in comparison to other forms of discrimination, so there are so many people who say ableist things or do something that is ableist probably without realizing it. Once you realize that ableism is everywhere, you find it everywhere.
That doesn’t mean that you’re getting worked up about nothing – just because ableism is everywhere doesn’t mean that you have to just get over it. But you do need to find a way to make it to the day when people avoid ableism just as much as they avoid other forms of prejudice.
For me personally, I try hard to not take it personally when people use most forms of ableism. Don’t get me wrong – when it’s appropriate, I try to address it and nicely ask people to cut it out. But it would be exhausting to be mad every time people use words like “crazy” and “insane.”
So what do I do? I focus on what I can control and what personally affects me, like people using “cripple/crippling” or “lame”. I support when other people call out ableism. And, most importantly, I remember that combating ableism is a marathon, not a sprint.
Everyday ableism | Examples of ableism in everyday life
Problem 4: Your Illness Impacting Relationships
Personally, I think that one of the hardest things about being chronically ill is the ways in which it affects areas of your life that really shouldn’t be affected by illness. Relationships is one area in particular. I think that it’s something that most people don’t expect; they think that they would never stop being friends with someone or that they wouldn’t avoid dating someone if they had a chronic illness, so it wouldn’t happen to them. But it’s not always true.
When I was diagnosed and finding my coping strategies, I lost friends because they couldn’t accept that my life had to change or that some things they did made my life worse. And that’s fine – they weren’t worth it. But there is an amazing chronic illness community online, and their support made things a lot easier to handle. I lost some friends, but I made others.
Platonic relationships are of course not the only ones. What do you do if someone loses romantic interest in you because of your chronic illness? First of all, screw them. This has happened to me a LOT: everything is fine and dandy and then I tell them I have RA and they are gone (even if I don’t explain how serious it is). It’s very annoying. Second of all, don’t fight for them. If someone decides that being with someone who lives with a chronic illness is too much for them, let them go. Whether they’re too emotionally immature to handle it or they just don’t want the ~drama~ doesn’t matter; you don’t need that kind of negativity in your life.
Problem 5: People Forget That Even If You Handle It Well, You’re Still Handling It
Many chronic illnesses aren’t clear by looking at someone, which makes convincing people that you are ill (and aren’t faking) harder. As the folks at Invisible Illness Awareness Week figured out, 96% of people who live with an illness live with an invisible one. This means that when you look at them, you wouldn’t know that they’re disabled and/or chronically ill. (Of course, few people are completely totally invisibly ill; if you know what to look for, you can tell.)
But assuming that people in your life know about your illness, if you handle it well, they tend to forget that you’re handling it at all. Just because I know how to handle my illnesses and I wear makeup doesn’t mean that I’m okay or even neutral. I still have to deal with my illnesses.
And if you never see me look anything other than pulled together, that means that I’m intentionally not showing my reality.
It’s more a statement about you than it is about me; it means that I don’t feel comfortable showing you the truth.
I still have to handle everything. I still have to take a ton of medications and I can’t eat a bunch of foods. I still have way too many medical appointments and way too much pain. I just cover it with coffee and makeup.
So how do you deal with this problem? One way is to be more open with people about your life. This isn’t easy, I won’t lie, especially if you’re afraid of people thinking you’re self-centered because you talk about your illness. And I’m not saying you do this with everyone! Start with the people closest to you.
Problem 6: Doctors Aren’t Listening to You
I have been in pain for 19+ years and diagnosed with chronic illnesses for 10+ years and man oh man have I spent a lot of time in medical offices. For those of you who need a quick recap, I spent several years in which doctors told me my ankle was fine but it turned out to be super messed up. Learning first-hand at 17 that doctors can be wrong (like, really wrong) has meant that I listen to and believe my body above what doctors tell me about it. And in the 10+ years since that surgery that proved I was right about my body, I’ve been proven right time and time again. Which also means that I have collected a list of what to do when a doctor isn’t listening to you.
A short version of that lis is: take notes at each appointment (word-for-word if you can); bring someone with you to your appointments, which is easier than ever if your doctors and doing remote visits now; ask them to explain their reasoning more; and so much more. I wrote a full blog post about this in 2019 after seeing a particularly difficult rheumatologist, which you can read here.
Describing Pain Levels to a Doctor
Problem 7: Getting Harmful But Well-Meaning Advice
What do you do when someone gives you advice for living with your condition, and they do actually mean well, but their advice is bad for you?
One example of this is someone saying “it could be worse.” This isn’t necessarily bad for you physically, but it definitely can be mentally! Generally, when someone says this, they’re trying to be comforting. They don’t know how to deal with the situation, and they don’t know what to say to someone who has a chronic illness. It’s often said when a chronically ill person tells a healthy person about their illness for the first time, mentions an increase in their symptoms, or discusses a large, negative event from their condition.
In these moments, a healthy person who may not have ever had health problems like that before, is often at a loss of what to say. They don’t know how to relate to or improve the mood of who they’re talking to, so they say what they know: “Well at least it isn’t worse! It could always be worse!” Saying this to people is hurtful because what you’re saying is, “You don’t have anything to complain about. Why aren’t you grateful that it isn’t worse?”
Another example is when people straight up suggest you do something that will cause physical problems. Whatever this is will depend in the person and the illness. A common one that I’ve faced is advice telling me to exercise more. Unfortunately for me, exercise makes my pain and illness worse 95% of the time. When people tell me this, I’ll either tell them that unfortunately that doesn’t work for me (including adding the phrase “I wish!” so they know that I’m not mad) or I’ll acknowledge the advice without actually responding.
If your health is well-known among the people you’ll be interacting with, try to come up with an answer to questions or a response to advice ahead of time. I personally find unsolicited advice to be incredibly grating and I have a history of being snippy and rude when someone gives me advice. By planning my answer ahead of time, I don’t do that and I’m able to give a succinct answer before moving the conversation to something else.
Chronic Illness Advice: Resources for the Newly-Diagnosed Patient | Don’t Say “It Could Be Worse”
Problem 8: You’re Afraid of the Future
It is SO hard to accept that your life is now forever different and then to plan for the future. 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 and that my future would barely be affected by my health. That wasn’t the case.
I have an illness that’s only going to get worse over time and I also have horrendous medical luck. If I knew when I was diagnosed what my life would be like now, I would be horrified. So it’s scary thinking about my future when I have years and years of experience with bad things.
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, or just how bad or good it will be.
This is a hard problem to provide a solution for. But I really advise not assuming that your future will be bad. I also suggest finding a therapist if you’re struggling with that. It can help to have someone else, someone who doesn’t have a stake in your future, reassure you or provide their advice.
The Impact of Chronic Illness on an Individual
What problems have you faced?
Like this post? Share this post + check out these posts:
What’s Heat Intolerance? An Explanation, We Need To Talk about the “Disease Warrior” Model, What To Do When Chronic Pain Becomes Too Much, How To Actually Rest When You Take Breaks
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.
Very informative
So many great points. The chronic illness I deal with is rather different from yours but almost all of these still apply. I only just started getting ANY sort of treatment because so many other doctors wrote off my issues as “stress.” Thank you for writing this because I really relate to so much of it.
You make so many great points in this post. I’m friends with a few people who have used social media to share some of these, as well. One thing that I’m really intentional about is watching how I use language and making sure I don’t use words like “crazy.” And I know there’s more than just language involved in ableism. I’m always learning and the information you linked will be helpful!
I enjoyed reading your post. I wspecially can relate to #5 People Forget. The problem with chronic illness is that it’s so daily, every day. Sometimes I just wish we could take a day or two off from our chroinc illnesses.