How to Love Someone With a Chronic Illness
I have Lupus, and I have been dealing with the symptoms for about five years now (although my goal is to be in remission someday.) Because I have a chronic illness myself, I have a lot of experience when it comes to the emotional needs of those who are sick. For years I have watched how people have interacted with me, and I’ve been amused by just how many miscommunication problems can arise from diseases.
I want to make it clear that this post isn’t a list of complaints, or a demand that everyone become educated so that those living with chronic illnesses never have to feel offended. I believe it goes both ways, that those of us who are sick need to be just as kind and patient when it comes to understanding the feelings of others.
This post is just for anyone who wants to show love to someone going through a health crisis, but doesn’t know exactly how to go about it. There are probably a lot things going on inside your loved one’s mind that you are having trouble understanding, so I hope this advice is helpful for you!
Let Them Know That They are Not Alone
When I was at my sickest my mom showed me this song. She even printed out the lyrics and hung them on my bedroom wall, so I would never forget that she was always going to be there for me. This song is now very special to me, and it taught me that the number one thing a person with a chronic illness needs to know is that they are NOT alone. They need to know that you are going to fight this battle with them.
Learn About Spoons
Take the time to learn about spoons. Once you understand this concept, your loved one’s actions might make more sense, and you will be able to avoid a lot of unnecessary tension and confusion in your relationship. Things that you think are character flaws (like bizarre habits, being late, cancelling plans, or always making you drive) may actually be coping skills they are forced to use in order to deal with their symptoms.
Believe What They Say
I’ve noticed that an astounding number of people with chronic illnesses (including myself) have to wait years to be properly diagnosed. Sometimes this is just because doctors can’t figure what’s wrong with you (which is absolutely terrifying to be told year after year.) But more often it’s because no one actually believes that you have a “real” problem at all. During those years you are told that you’re not sick, that no one believes you, and that “it’s all in your head.” You have to watch both doctors and loved ones dismiss your cries for help over and over again, and instead recommend that you get psychiatric care. By the time your physical disease is diagnosed, the emotional damage of having your words ignored is already done. And on top of that, when you live with an “invisible disease” that cannot be clearly seen by strangers, your needs often get dismissed, or you can even be treated with hostility. So keep in mind that your loved one is probably especially sensitive about people believing what they say, particularly when it comes to medical care. When they are talking about their illness, be sure to listen to them carefully and take what they are saying seriously.
Keep it Positive….
Try to remember that your loved one is already scared, so reminding them of how serious their disease is (especially when there’s no reason to) can be upsetting. I can’t even count how many times this has happened to me. I meet someone, and while we are chatting, my autoimmune disease naturally comes up. I see their eyes widen and the color drain from their face, and they blurt out something along the lines of…
“You’re way too young to have your life completely ruined, you must be devastated!”
Or even something like…
“Ohh nooo, I knew someone who had lupus…..they DIED. It was a long, painful, HORRIFIC death.”
Then they smile and walk away, not realizing that they pretty much just ruined my entire day. I like to think that conversations like these arise from good intentions, because people must think that by showing me sympathy they are making me feel loved. And they are not completely wrong. You can definitely show genuine sympathy and acknowledge that it’s a crummy situation, it’s not like I want people to congratulate me or start doing cartwheels. But in general, whether you have just met someone or you’re their closest friend, if you don’t have something encouraging to say then don’t say it at all.
….But Still Be Realistic
And then there’s the other end of the spectrum, not taking a person’s disease seriously enough. It’s equally frustrating when people trivialize your illness, or expect you to act exactly like a healthy person all the time. This happens to me surprisingly often, so I know how absolutely devastating it is when people imply that you are not worth saving if its going to involve any kind of sacrifice on their part. It’s not okay to ask them to cheat on the diet that they need, because you want to eat fun food. It’s not okay to get mad when they get tired and need to go home early, because you want to stay out. They should never be expected to compromise their needs for your wants…EVER. So when trying to make decisions, remember this rule and follow it strictly.
Remember that your loved one already has their own body battling against itself, so the last thing they need is to battle against you too. It is much harder to make healthy decisions when those around you are encouraging you, or even guilting you into doing things that will compromise your health. So because you love them, take the time to learn what their physical needs are, and then do whatever it takes to help them take care of themselves. Fight for them instead of against them!
Don’t Tell Them You Understand How They Feel
Don’t say you understand, because I can guarantee that you don’t! And when I’m doubled over in pain for the fifth day straight, bawling my eyes out, not sure if it’s appendicitis or just another run of the mill lupus flare, the last thing I want to hear someone say is “sometimes I get cramps too, so i understand.” Again, I think this is another one of those messy miscommunication problems. If you’ve ever said this, you probably believed you were making your loved one feel better by proving that they are not alone. But the message they were actually receiving is that they are definitely 100% alone. This phrase makes them realize that they are the only one who truly understands how deeply they are suffering, and that is an incredibly lonely feeling. It’s basically the equivalent of walking up to someone whose relative just died, and saying “my cat died too, so i understand.” While both may be sad, pretending they are on the same level is actually offensive.
Show Some Interest
When someone genuinely asks how I’m feeling or wants to learn more about my disease and how it affects me, it makes me whole day. It’s wonderful having someone show some interest, because deep down I want to talk about it very badly. But unfortunately, chronic illnesses last a looooong time. And because of this I am always hesitant to bring up the topic because most people consider it “old news” and make it clear that they’re not interested in hearing about it. So if you love someone with a chronic illness, try to always remember that, unlike you, they don’t have the luxury of “taking a break,” from their disease. They have to face it every minute of every day, possibly for the rest of their life, and it affects every single thing they do. So naturally, they will want to talk about it a lot more often than you do!
Have Patience When They Get Overwhelmed
I like to think that developing an autoimmune disease has helped me understand elderly people better. I used to wonder why they were always so grumpy and upset about everything, but now I get it. When you’re physically suffering day in and day out, knowing that you might never get better, it’s like having a rain cloud follow you around. And when you’re born healthy and then have your health ripped away, its even more emotionally devastating because you have to go through a grieving process of the life you thought you were going to live. It’s very hard to look on the bright side a lot of days. And sometimes the tiniest things (that you don’t even really care about) can cause an emotional meltdown, because you’re just too overwhelmed.
Many people with chronic illnesses feel guilty because they don’t like making their loved one’s lives harder. They are absolutely terrified about the lack of control they have over their body and their future. They are filled with bitterness and anger because everyone else gets to enjoy perfect health without trying, and at the same time feel discouraged because they try so hard to be healthy but don’t see any improvement. They feel embarrassed because they know that those who don’t understand their disease are constantly judging them for their actions. They feel lonely because they are forced to stay at home more often, but also because no one understands what they are going through. They are depressed because they know they are missing out on life experiences. They go through long periods of hopelessness because they know the pain and suffering might never end. It’s also very common for those with chronic illnesses to develop full blown panic disorders or depression. All of this doesn’t mean people with illnesses have an excuse to be mean, or mistreat you, or do anything whatsoever to hurt you. Just keep in mind that if your loved one is upset about something trivial, they might not actually be upset about it. They are probably just hurting so much that they don’t know how to process it all. They are still responsible for their actions, but if you want to help them out, make the selfless choice of not responding to their attitude with even more negativity. Instead give them a big hug, tell them you love them, and remind them that everything is going to be okay.
Remind Them That Your Love Has No Limits
Like I mentioned above, many people with chronic illnesses feel guilty. They don’t enjoy making everyone’s life harder, but they can’t help it because they have no control over the situation. And unfortunately, one of the things I’ve learned from being sick for so many years is that some people’s sympathy does run out. You can only be sick so many times before some people “get sick of it” and don’t want to interact with you anymore. This helps you find out who your real friends are, which is a plus, but it can also leave you with a complex. You end up terrified of being “too sick to love” so you start avoiding the topic and hiding your symptoms as often as possible. This does not lead to healthy relationships, because battling a chronic illness is hard enough, but doing it silently is heartbreaking. I imagine this is also frustrating for people who love someone with a chronic illness, because if you don’t know the true extent of their suffering, how are you supposed to help them?! So ask them to be more honest with you, and remind them often that they are worth it, and that you are going to stick by them forever.
Give Them A Little Extra Attention Sometimes
Something about having your body go through crisis mode makes you feel absolutely starved for love. All I really want at the end of the day is for someone to say that they care. So if you love someone who has a chronic illness, make sure you spend time with them regularly. Don’t allow them to isolate themselves even if they try, because it’s probably just a cry for help. Sit with them when they are feeling sick, and force them to do fun things when they are feeling better. Make them their favorite food. Watch their favorite movie with them. Bring them flowers. Give them a million hugs. Make them laugh and remind them often of all of the good things in life. Any tiny thing you do “just because” will be a big deal to them. Because when someone actively tries to love me, I get so happy that I forget about being sick for just a few minutes. And that is the best gift you could ever give someone!