It’s got to be incredibly difficult to watch someone you love struggle with something as consuming as chronic illness. I’ve spent a lot of time in the past getting upset (and, at times, downright angry) when people make insensitive comments that I think they honestly believe are helpful – things like “but you don’t look sick,” “you’re too young to have that,” “it could be worse,” “you just need to be more positive” and the list could go on and on. But I recently realized that the problem isn’t so much that people don’t care or that they deliberately want to hurt me; it’s more likely that they really just have no idea how to be helpful! Chronic illness doesn’t come with a handbook. It’s confusing enough at times for me and I’m the one who experiences it directly, so it’s no wonder why others truly just don’t have a clue what to do. So I’ve decided to make a list of some simple things that I’ve come to appreciate most that may hopefully help loved ones better understand how to meet the needs of someone with a chronic illness.
It’s as simple as it sounds. Sometimes I feel overly needy when I ask for anything because I need help so often that I worry I’m a burden. It’s extremely helpful to be reminded (and reminded often!) that you’re there for me anytime and that I don’t burden you. I know it’s got to be difficult to deal with the constant fluctuation in my health, but I need someone who can prove to me that they mean it when they say they’ll always be there; I need that consistency in my life!
Many of us with chronic illnesses are brilliant actors and actresses. We often assume that people don’t really want to hear how we’re doing when they ask – it’s just a social nicety. That’s not to say they don’t care, it’s just that people don’t usually have the time, it makes them uncomfortable or they just want to hear that you got better. Ask how we’re doing and we might immediately say “OK” or “I’m getting by,” when in reality we could be screaming in our heads, “I’m miserable!” or thinking about how we spent last night in the emergency room but are back at work smiling today. So be persistent and make it clear that you want the truth. I always appreciate this, as small a gesture as it may be.
Oftentimes acquaintances (and sometimes people close to us) think they know what’s going on in our bodies better than we do. I think they typically mean well, but the way people go about trying to help is often problematic. If you ask and want to know how we’re really doing and what’s really going on, we’ll tell you exactly what you need to know. The problem occurs when people assume they know what’s best and don’t actually listen to what we tell them, and frequently compare us to others and miss out on learning about our individual situations. No two people with a chronic illness are the same. Even if two people have the same disease, they have a different genetic make-up, they have a different psychological make-up, they’ve had a different childhood and they have completely different bodies with different reactions to the disease! My point is this: people often try to compare chronically ill people in the hopes that what helped one person may help the other, but to us it comes across as if you aren’t listening to our individual circumstances. You don’t even have to worry about trying to fix any problems we may discuss (see #4). Just having someone to listen is huge!
4. Don’t worry about fixing things.
I think loved ones often feel helpless when watching someone they love struggle, and they want to fix the problem causing the struggling (duh, right?). Unfortunately, with chronic illness there is no quick fix. Given that we don’t even know how to fix it ourselves, we would never expect you to fix it! Trust that your loved one is constantly trying new things and doing all they can to get better. I guarantee that is the case. So don’t worry about searching for “the cure.” The thought and effort is greatly appreciated, but in the end, I think it’s actually more helpful just to put more time and effort into the kinds of suggestions I’ve listed here than it is to keep searching for ways to fix an unfixable problem.
5. Ask questions.
I really appreciate it when people close to me ask questions about my illnesses. It shows that you respect me enough to listen and not assume that you know everything about what’s going on. It also shows that you care enough to want to learn more.
6. Believe me.
Please, please, please don’t doubt what I share with you! It is so difficult to be vulnerable and share such personal details of your life with someone and it’s soul-crushing to not be believed. Trust me, I know this from experience, be it with doctors, family, friends, significant others and so on. Many of us are probably hiding half our symptoms half of the time, often for the very reason that we’re afraid of being doubted, so if we choose to divulge something, know it’s really affecting us.
7. Try not to assume things about my mental state or pain level, even on days I’m out and about.
There are some (OK, lots of) days where I force myself out of bed and out of the house when I’m in pain, depressed and/or anxious. That’s quite simply because I am in pain every day and depressed and/or anxious more often than not, so if I didn’t force myself I would do absolutely nothing. So while I appreciate the thought behind saying I look like I’m feeling better, know that it’s all a carefully crafted illusion created by lipstick and lots and lots of caffeine! This is important because I think the thing that creates the most doubt in people’s minds about my illness is my appearance and my ability to do some things. I can do things, but know that I pay for everything I do later in added pain and symptoms. My symptoms can also vary not only day to day but hour to hour, which makes planning difficult and can be confusing when I can’t do what I just did this morning by the afternoon. I try to have as normal a life as I can because, well, who wants to be sick all the time? But that seems to be really confusing to people (which is completely understandable because it’s difficult for me and it’s my life!). So just try to remember that while I’m trying my hardest to have fun and appear normal, I still have my limitations and may still need some help – even on “good days” when I appear fine.
8. Express how you’re truly feeling.
It’s actually comforting to me when people have told me that they’re scared or worried about me, which may sound strange, but it makes me feel a lot less alone. If you’re scared or uncomfortable or don’t know what to say, please don’t be afraid to tell me so! One of the things I’ve been forced to learn from being sick is to be more vulnerable, and that being vulnerable, while still scary, isn’t a bad thing. I feel that actually saying exactly what I’m feeling – even when it’s something considered negative like fear or discomfort – makes my relationships a lot more honest and meaningful. Please share your feelings with me! I know that my illness affects you more than you show me (which I think is often because you’re trying to stay strong for me), but there’s nothing weak about expressing your feelings, and it actually helps me feel validated knowing you’re feeling similar things.
9. Try to be patient with me.
Getting frustrated with me is understandable at times, but please remember that I’m even more frustrated with myself. Try to be patient when I need extra help or can’t go out again. Think about how I must feel: like a burden, like a let-down, like a bad friend, significant other or family member…so it makes it a lot easier to deal with the guilt that comes as an inherent part of chronic illness when the people around me are as patient as possible.
10. Continue inviting me to things even when I often can’t attend.
Like I said above, please trust me when I say that I absolutely hate having to miss out on things, and I feel extremely guilty and frustrated when I can’t go or have to cancel plans. I love it so much when people don’t forget about me and continue inviting me even though they know I likely won’t be able to go. I still desire to feel included and remembered.
11. Encourage me.
It is incredibly difficult to have hopes and dreams as someone who is chronically ill. Chronic pain truly alters your brain both chemically and structurally; it literally rewrites your brain to make you more depressed and anxious. Which, when you think about how pain makes you feel mentally, this shouldn’t come as much of a surprise. But being constantly in pain wears you down so much that it makes you feel as though you’ll never escape and that there’s no point in trying to accomplish anything. It makes you feel that you’re a failure before you even begin. It’s also extremely discouraging to spend years hoping different doctors will help you, hoping different medications will help you, hoping different therapies will help you…only to have your hopes crushed almost every single time. You kind of learn not to get your hopes up anymore, as sad as that is. These things make it very hard to continue looking forward to the future and to follow your hopes and dreams. It even makes it hard to make new hopes and dreams, which are essential parts of creating motivation to stay alive! What I’m getting at is that many of us crave encouragement. Whether it’s something as simple as encouraging us to keep going to doctors, to keep up with our hobbies as best we can or just to make sure we keep getting out of bed each day and take care of ourselves, that feeling of being cared about and believed in is huge.
12. Acknowledge my victories (both big and small).
Another thing I absolutely love is when people tell me they’re proud of me. I know I sound like a 5-year-old, right? But for many of us, getting out of bed truly is a much bigger accomplishment than you’ll ever know, and it’s hard to know that nobody understands what it takes just to do the most basic things that make up a life. To understand what life is like for people with some chronic illnesses, here are a few comparisons that may help put things in perspective: People with postural orthostatic tachycardia syndrome (POTS) have symptoms such as chest pain, trouble breathing, fluctuation in blood pressure, tachycardia and heart palpitations. Many people with costochondritis (inflammation of the cartilage of the ribs, occurring as a symptom of many chronic illnesses) fear they may be having a heart attack before it’s diagnosed because the pain is so severe. Doctors have said that the average, healthy person would have to stay up for three days straight and then try to function to understand the level of fatigue typical of someone with fibromyalgia.
And folks, one of my favorite chronic illness jokes is that chronic illnesses are like Pokemon – you gotta catch ‘em all! Most people have many comorbid chronic conditions, so imagine living with all of the above problems and trying to function. I don’t want pity, I just want awareness and acknowledgment. Really, all it takes is something as simple as saying, “I’m proud of you for making it through another day. I know it was hard for you.” What I see as accomplishments may seem silly to you, but to me it feels like I conquered Mount Everest by getting out of bed! I’m painfully aware that I don’t have as many big life achievements to celebrate, so I’ve had to shift my perspective a bit and I’d love it if you’d take part in celebrating my tiny victories with me!
13. Take care of yourself.
I think this is something a lot of caretakers and loved ones forget or don’t think about (I’m especially thinking of my parents who are incredibly selfless). As the saying goes, you can’t pour from an empty cup. You can’t help me if you aren’t taking care of yourself properly. Taking care of yourself is a necessity and is not selfish in any way.
14. Remember that a relationship is a two-way street.
This is a good time to point out that my relationship with you is still a relationship regardless of me being sick, which means I’m here to help you, too! It feels great to help out others. When you need some time to take care of yourself, let me help in any way I can! When you are going through something tough, don’t downplay it or feel bad complaining because you think that my situation is somehow worse. Everyone’s pain is equally valid and difficult. When you have something to celebrate, I want to express how proud I am of you! Our lives may differ vastly, but a relationship is about supporting each other. Chronic illness changes a relationship, but that doesn’t mean I don’t still want to take care of you in whatever ways I can.
These may seem like small, simple suggestions, but it’s these little gestures that have meant the most to me. It can be difficult to maintain a relationship with someone who has a chronic illness, but I think the struggles that are faced make these relationships stronger and more essential. It’s by no means easy, but I hope that the unique challenges brought on by chronic illness may help you come to appreciate your loved ones and your life even more, as they have for me.
This post originally appeared on What It’s Really Like to Be Sick.
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