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. Because of that, in today’s post, I’m going to talk about how chronic illness affects relationships, and not just reasons why some relationships would end because of a chronic illness.
As a reminder, I am not a medical professional. I share my own experience and when I don’t, I include links to the source of my information.
What Counts as a Chronic Illness?
If we’re going to address chronic illness and relationships, we need to talk about what exactly a chronic illness is. The simple definition is that it’s any illness that is chronic. The CDC says, “Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both” (x). Using the qualifier of one year makes sense because if you have an infection that lasts a month, that would be annoying and technically chronic, but it wouldn’t necessarily be a chronic illness. (I say this as someone who lives with multiple chronic illnesses but also was on antibiotics for a full 3 months last year due to a collection of infections.)
Some examples of chronic illnesses are diabetes, autoimmune arthritis, asthma, Ehlers-Danlos syndrome, heart disease, lupus, Crohn’s disease, epilepsy, multiple sclerosis, PCOS, and more. WebMD clarifies that “Often, they don’t have a cure, but you can live with them and manage their symptoms” (x). I’m not a medical professional, so I don’t know the answer to this, but I know that cancer would fall under the definition from the CDC. So this is a very big category!
I also want to clarify that while chronic pain can be a symptom of some chronic illnesses, they’re not the same thing. Some people have a chronic illness that has symptoms that aren’t pain, or they sometimes have pain as a result of their other symptoms. For example, I have asthma. When my asthma is worse, over the course of that flare, I can develop chest pain because of how difficult breathing is for me. But that’s a symptom of the symptom, if that makes sense. Additionally, you can have chronic pain without an illness. If you are in a car accident, you might have life-long pain due to your injuries, but that’s not an illness. This could very well apply to you if you have chronic pain but not an illness, so I’m not ignoring you or saying that this isn’t something that could happen to you, but I do want to focus on the illness side.
Chronic illness advice: resources for the newly-diagnosed patient
Why Would Chronic Illness Affect Relationships?
Many many things affect our relationships with others. It can be big things, like your relationships with your friends might change after you get married, or it can be smaller, like your relationships with your friends can change when you decide to always go to the same weekly exercise class. So if those things can change relationships – positively or negatively – why wouldn’t something like a chronic illness?
For some people, their chronic illness is a small part of their lives. They take a few pills a day, go to the doctor monthly, deal with manageable daily symptoms, and that’s “it.” But for others, it affects everything about their lives.
Let me give a personal example: In 2018, I had major ankle surgery. I was on bed rest for 2 weeks and when I started physical therapy, I had 3 appointments a week. That meant that I had a minimum of 5 medical appointments a week. Plus, I started my current job. All of this – plus the physical aspect of recovering from surgery – meant that I was exhausted by the end of the day, not to mention the end of the week. I had no energy to see friends! But I’m a bit of a surgery pro unfortunately, so I made a huge effort to see my friends and keep in touch with them electronically. If I didn’t do that, and if my friends weren’t used to me having surgery, my relationships with them could have deteriorated or changed.
What to do if a doctor doesn’t believe you
So How Does Chronic Illness Affect Relationships?
Here are 6 situations in which chronic illness could affect a relationship. But I’m not going to leave you high and dry! For each situation, I’m also sharing how you can help. I’m focusing on the perspective of the other person in the relationship because a lot of times the relationship changes because of the other person’s reaction to the patient’s illness. That’s not to say that everything is always the other person’s fault; patients, I know you know that we can react to these situations negatively ourselves! It’s just simpler and more straight-forward to address the other person in the relationship. If you are a patient and you find yourself in one of these situations and you can feel yourself acting negatively to the other people in your life, I hope you can do some soul-searching and do your part to repair the relationship between you.
Situation #1: The patient is dealing with tough things – Whether it’s a new diagnosis or a particularly difficult time, the chronic illness patient is going to go through tough times more frequently than the other person (at least health-wise). Different people react to things like this differently. They might pull away. They might snap at other people in their life. They might try to push themselves way too much … and then pay for it by causing a flare.
How can you help? Tell them that you are there for them. Make sure they know that they have you as a support system! And, above all, do not make them feel like a burden because they’re upset. Of course, if they’re taking their emotions out on you, that is absolutely not okay. Establish your boundaries!
Situation #2: The patient has to say “no” to more things – Chronic illness takes up space in our lives. It might be more appointments in a week. It might be that they have to rest more, either suggested by their doctor or required by their body (or both). It might be that they’re not supposed to/can’t do the thing that you used to do together. There are a variety of reasons why the patient might says “no” to more things, but it’s definitely something that can affect them.
How can you help? Keep inviting them to things! Don’t give up on them, especially because they not being able to do things isn’t because of you (unless you’re a jackass). If you guys used to do one particular activity that they can’t do any more, then offer doing other things. Aren’t sure what you can do? Give them multiple options, and then ask them what would work for them. Similarly, when you make plans, give them several options of times and days.
Situation #3: The patient has to change their life – When someone is diagnosed with an illness or their illness gets worse, they generally have to make some life changes. Even just small ones like going to the doctor multiple times a week or taking medication multiple times a day can weigh on a person, but if they have to make larger changes, it can be really difficult. Over the years, I’ve had to cut out gluten, dairy, corn, soy, and egg, which was a really difficult adjustment mentally. I also had to accept (after learning the hard way) that my body can’t handle working 40-60 hours a week … and then I had to move in with my parents. Even with having an incredible support system, all of those things were really freaking hard on me. And when you’re going through an especially tough time, that can show itself in your relationships.
How can you help? Be there for them in any way you can and cut them some slack as they adjust. But the best thing you can do, in my opinion, is encourage them to see a mental health professional. Some of the things in this list are things that the other people in the patient’s life can help with, but this is a lot trickier. Sure, you can help scope out a restaurant that satisfies their new dietary restrictions. But you’re not a mental health professional, and you shouldn’t have to be. And if you are a mental health professional, you know that you can’t treat them and you should avoid accidentally going down that path.
Chronic illness and mental health
Situation #4: The patient doesn’t like how they look – It can take a real toll on you when you don’t like how you look. One reason for this is weight gain, which is a symptom of multiple chronic illnesses, not to mention a side effect of medications. One example is prednisone, a steroid “used to treat conditions such as arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, and immune system disorders” (x). Weight gain is also a side effect of hormonal birth control, including the medication depo-provera, which is used to treat endometriosis. I should know; I was on it for 3+ years. I went to a different medication because it caused me to gain over 20 pounds over the course of the years I was on it. I’m now happy with how I look, but I’m 5’3″ and it’s not healthy for me to gain more weight. Another reason for disliking how you look is the opposite of above: weight loss. I look at pictures from The Fiasco, when I had lost over 30 pounds, and I hate how I look there because I truly look ill.
There are so many other reasons why someone might dislike how they look: if they have a stoma bag, if they’re using a mobility device for the first time, if they have visible scars, you get the idea. Now, all of these things don’t mean that the patient should dislike how they look. But it can take a while for them to feel confident again! And disliking how you look can make you unhappy overall.
How can you help? If you are in a relationship with the patient, then make sure to tell and show them that you like how they look. But don’t do comparisons with how they looked before! If you’re a friend or family member of the patient, make sure to compliment the patient. More than anything, though, for everyone in all situations, make sure to compliment people on things other than looks. But don’t start doing that only when their appearance has changed! I know that those are a lot of qualifications, but try to work around them.
Building self-confidence when chronically ill
Situation #5: People in the patient’s life aren’t supportive – If even one of the things I’ve listed so far is affecting the patient, then their life is in a bit of a turmoil. They need the support of the people in their life! A great support system can make or break a chronic illness patient’s life. Between family and friends, I have an incredible support system. But that wasn’t always the case. I was diagnosed in college, and my new chronically ill life wasn’t really conducive with college life. And it wasn’t even a “new” life; the only thing was that now I had a diagnosis, and I had to make changes to accommodate that diagnosis. I had several friends who were there for me in the first few months after my diagnosis, but by the time that I was a year out from it, they weren’t really in my life any more. Luckily, that wasn’t the case for a lot of my friends, but it still hurt.
How can you help? Be there for them! You’re going to have to adjust your expectations for their lives and your relationship, but that’s on you and not on them. Listen to them, offer suggestions if they ask for them, generally be there. And try to be aware of the things you are saying to and about them! Really think about the language you’re using.
Situation #6: People in the patient’s life say cruel things, intentionally or unintentionally – I think it’s pretty obvious how someone intentionally saying cruel things would make relationships of any kind difficult, so I’m not going to go super into it. Onto unintentionally … Ableism is so interwoven in our society and language that people often say ableist things without realizing it. And it’s hard to maintain a relationship with them if they’re using words or phrases that are historically harmful to our communities, even if the person using them isn’t aware of that history.
How can you help? Keep learning! Learn about common ableist words and try to drop them from your vocabulary. Learn about the experiences of other people with the illness that your loved one has. You can learn a lot by reading articles and, honestly, social media feeds, which you can find by using handy-dandy hashtags.
How have you dealt with the ways chronic illness affects relationships?
Like this post? Check out:
How To Actually Rest When You Take Breaks, Is Chronic Illness a Disability?, Chronically Ill Tips: Preparing for Medical Appointments, Questions Not To Ask Someone with a Chronic Illness
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.
Thank you for this post Kate. This post is very personal to me. I had a close relative who suffered chronic illness for several years and we all underestimated what she was going through and misinterpreted some of her coping mechanisms. It is only after she passed away that some things came to light. Compassion is very important. We need to teach more of it to our children.
I am the patient. I did not only lose my ability to do things, sleep and breath normally. I seem to have lost the ability to communicate – it feels like I am trying to say one thing and other people hear something different. It affects my confidence to talk and share my life. It is also affecting my confidence in everything. I feel like such a failure.. Sorry for the rant. I just needed to say that to someone else.