How To Support The Chronically Ill People In Your Life — And Why It Matters
It’s painfully difficult to be the only chronically ill person in your family or social circle. It’s hard to relate to anyone, or to say how you’re feeling without fear of over-stepping their boundaries or dampening their mood. When people have a chronic illness, there are periods of time where they are unable to do anything for weeks other than lay in bed. For me personally, there are times when my muscles and limbs feel so weak that I don’t have the energy to open my laptop to write, or even stand up without shaking. Lupus has given me migraines and dizziness so severe that I’m physically disabled for weeks on end, and become frustrated and upset. It has caused extreme mental exhaustion.
It’s hard to explain to the people around you that the reason you’re upset is because you’re not feeling well. Because your “sick” is not their “sick”, and it probably never will be. For the general public, they’re relatively healthy. They might experience a bad cold or maybe they have some type of small accident like slicing off a finger while cutting up carrots. For those people, they will hopefully recover, and not have to suffer anymore than that brief period of time. For us with chronic illnesses, we suffer in silence every single day. A sliced off finger could take longer to heal and run us the risk of severe infection, a regular cold could take months to clear up or develop into something much more sinister like meningitis. When the immune system is already compromised, any small thing can send your body into a frenzy. You could be perfectly fine for weeks, months, and years, then suddenly you’re stuck in bed and unable to get up. You have to exercise extreme caution.
It’s like running through a meadow on a nice day, then looking down and realizing at some point, you ran into a field of landmines. You could get blown to pieces in any second.
What people DON’T seem to understand is at any point, anyone can become disabled or fall critically ill. Whether it’s losing eyesight or hearing due to old age, a random unexplainable seizure that leaves an otherwise healthy woman braindead, a man getting his legs bit off by a shark, or a teenager developing stomach cancer — anyone could be put in a predicament where their lives are changed forever. Anyone. We are all living on the brink of chaos and misfortune and sadly no one, not even the healthiest of people, is 100% safe from that phenomenon. As dim and undeniably depressing as that realization is, it is also a gateway to a lot of positivity. It’s a perfect way to explain the reason why you should be paying more attention to those around you, especially those who live in a never-ending mental and physical battlefield every single day.
The answer is compassion. Compassion for all parties — not just for the person who is ill. Something so simple and infamous, yet it slips through the fingers of so many. Compassion is a special something that everyone needs, especially those who are chronically ill. It can go a long way to ensure that the ones you love know that you’re there to support them (and vice versa)— no matter what. Yet, it seems that sometimes no matter how much someone loves you, they are not able to properly show compassion in the ways that are needed most. Everyone says they love you until it’s time to actually love you. I know that seems like a harsh statement. It is.
We throw the word “love” around a lot. We love our family members, we love our boyfriends and girlfriends, we love our friends (and sometimes, our acquaintances we just met in the bathroom after a fun night out). But how much of that love is real? How much is backed up by action and compassion? How many of those people are willing to be there for you when it’s most needed and when times get difficult? If the people you surround yourself with do not show compassion, they are not people that are needed in your life. It’s not considered love if there is no compassion on both sides. Compassion is an easy way to help those around you, especially those going through a flare up (a period of time where their disease is highly active and progressing quickly, with symptoms becoming unbearable and debilitating).
One way to show compassion is through listening. For certain people, especially myself, it’s very difficult to put into words exactly how crappy everything seems. Most of the time, I would rather say nothing because the pain is so intense and I know talking about it will just make me upset. It’s also mentally taxing to feel myself getting weaker and weaker everyday, while the people I want to be with the most are out enjoying themselves (or trying to as much as possible). It’s a struggle between desperately needing someone to voice your frustrations to, but also not wanting to ruin their day by being so down. This can become even harder when your closest confidantes and the ones you love the most, are starting to feel the emotional ramifications of your illness.
Compassion goes both ways. As someone who is chronically ill, it’s important to understand that not everyone has the mental capacity to fully be there for you. Understand that everyone is going through something, and sometimes we need to take a step back and see how our peers are doing as well. It’s very easy to fall into the “woe, is me” trope when having a chronic illness. While it is justified, it’s not always helpful. Sometimes, you have to pick and choose when (and who) to confide in depending on what’s going on in their lives. I know firsthand how difficult this can become — the last thing you would want to do is topple more problems on top of someone who already has problems of their own.
This comes back to the idea that we are all at risk for illness and disability, and mental illness is no exception. There are so many people fighting an internal and invisible battle, and sometimes the easiest way to connect with someone is to simply ask if they are okay. Ask if it’s okay for you to vent to them. Ask how they’re feeling. Ask if they’re okay with you sharing your experience with them. Ask if there is anything you can do to help them. Listen to their concerns, especially if it’s becoming difficult for them to see you struggling. Make sure you’re doing your part in helping to make this world a little more positive, especially for the ones you love.
Compassion should be reciprocal and symbiotic.
As someone living with Lupus, I can say that feeling heard is a big way to support people with chronic illnesses. Some days I don’t want to talk about how I’m feeling at all. Other days, I just need someone to listen, even if there is no immediate solution. If you, as the confidante, are in the right head space and are able to help the person you love, please do. Offer your ears, offer your support, offer your heart. Let them know that you’re there for them no matter what and are willing to listen without judging. Let them know that you are not going to leave them, and try your hardest to see how difficult it is to be trapped in a body that is working overtime to terminate its host. Hear them out without making them feel like they are intruding on your life, or like they are troubling you by explaining the difficulties they’re experiencing.
Chronically ill people need a lot of extra help when they’re going through a rough time.
Some people are ready and able to help. Others are not. And if you (the confidante) aren’t in a place to be there for them (the “sick” person), you need to let them know so they can find people who are. The biggest form of support is showing love through action, and never making someone feel bad about their condition or about needing help. There have been seemingly millions of times where someone reaches out to to see how I’m doing, but doesn’t actually listen to what I have to say or how I’m feeling. It’s used as a time to unintentionally criticize my feelings or call me overly emotional, without understanding the pain behind my frustration. Others may accidentally take this declaration of emotional pain as an attack on their spirit and livelihood, putting a dark and ominous cloud over their otherwise sunny day. This hurts the most, and this is the main reason people with illnesses do not like to share their exact thoughts — for fear of seaming too damaged or too depressing to be around.
However, it’s just as detrimental to keep these thoughts to yourself, as it can become overwhelming and harmful. The biggest thing of all, is to never let us chronically ill people feel like we are a burden. Never make us feel like our existence is a nuisance. We are already living in a body that feels traitorous and prison-like, and the best thing for us is to find people that are truly listening to understand and to learn, and not listening just to say they are listening.
Try your hardest to be present and listen without telling anyone how to feel. Offer advice, but don’t make it seem like you know more about what’s best. Understand that we are going through an incredibly frustrating time, and we might need a little more reassurance than we normally would if we were in remission.
We’re all trying to live as positively and as happily as we can, and sometimes we all, even at our healthiest, need a little help. Be there for each other and truly listen with the intent of learning and helping. One day, we will all inevitably find ourselves in a position where we are severely ill or hurt and need help. Extend your compassion when it is needed and it will be returned to you tenfold. If you’re reading this and you’re sick or unwell, I promise you things will get better for us. We just all need a little communal support until it does.
