While I believe that I am qualified to offer this kind of advice, I do want to make it clear that you should sit down with your partner to come up with a more personalized list of ways to show your support. At the end of the day, this list is created with mainly my own experiences in mind so you’re free to take inspiration from my suggestions, but it would work in your favor if you approach your partner with this topic. You can even use this as a talking point by reading through this together, and then sharing in a deeper discussion about how you can help make their everyday life easier. I guarantee that they’ll appreciate the effort you put forward. Bear in mind that your intentions can only be well received if you actually put the things you learn to practice. It takes very little effort to adjust your day to day for your partner, but it’ll hack away at their affections for you if you show them that you’re all talk. Actions speak louder than you think, especially when your partner is a chronic patient. Be mindful.
1. Patience is vital
This might seem self explanatory, but it takes a considerable amount of tolerance to live with a person that isn’t healthy. Your partner has to juggle medications, daily symptoms, constant doctor’s appointments, constant diet concerns, different kinds of therapy and numerous tests if they’re at the start of discovering a treatment for their chronic conditions. If you weren’t around in their life during their cancer treatments, there are some things you’re going to learn about from the start of the relationship but you have to remember the meaning of the word ‘chronic’. As the years progress, you’re going to feel your patience waning however – there is no ‘cure’. Chronic conditions are a life-sentence. While you are valid whenever that feeling of ‘resentment’ or ‘impatience’ washes over you, I need you to remember that your partner does not want this anymore than you do.
Your partner is trapped in a body that is, at most, surviving at just 50% capacity in a world where the normal capacity could be set anywhere between 100-125%. You can see their everyday as a walk in the park, but for them, they might as well be navigating through the North Sea in nothing but a life-boat. Unless you are actively walking in their shoes, you don’t understand how hard just waking up in the morning can be and there are days where you don’t have any patience left to give, but those are the days where you’ll need to dig into your reserves because that means your partner is struggling just as hard. Don’t be afraid to create a safe space for the both of you to hash out your frustrations. Bottling them up will do nothing to help you, nor will it help your partner, as the pressure will only build and soon boil over. The last thing you want to do is lose your patience. It’ll lead to an explosive conversation where you’ll say things in the moment, and that’ll deeply affect your partner. Should that happen, you need to make sure that your partner knows they are not a burden, and that your anger is not a reflection of what they’re doing, as you could deeply wound your relationship if you don’t communicate your feelings in a positive way.
2. Be considerate and attentive; learn your partner’s limitations and respect them.
In the world of chronic illness, it is easy to succumb to the belief that enforcing a healthy lifestyle that has plenty of exercise, healthy food choices and sleep schedule seem like an easy ‘fix’ to some of the chronic problems a person can suffer. If it were that simple it would not be labeled ‘chronic’. If you grow concerned over their choice of food, and exercise, don’t be afraid to invite yourself to one of their doctor’s appointments. Get a clear picture of your partner’s health problems, and listen to what their team has been instructing them to do. I know there are days I want someone to accompany me as sometimes it is hard to retain all the information you can learn in an appointment. Another set of ears and eyes in the room could take the weight off of your partner’s shoulders, and you can be included to help keep them on the path they’re needed on in order to get results.
However, do research. Something that works for you might not work for your partner. Especially when it comes to diet, as many people suffer from chronic issues of the gut, which makes a visit with them to see their doctor as a vital visit if you want to be involved. Don’t expect your partner to be able to follow your ‘rules’ if you can’t be bothered to learn what makes them ill. At the end of the day, you are not the one who has to deal with the consequences and you don’t want to be responsible for making your partner sicker. It is okay not to know everything, and you’re allowed to ask questions. As a matter of fact, most doctors encourage family members to participate as they believe it would further help their patient follow their treatment plan. It shows a good support system, and a clear line of communication with all parties involved. Your involvement just might inspire your partner to do better for themself, and with the both of you on the same page, it’ll weaken whatever tension might linger between the two of you whenever it comes to conversations about health. Be fair in your approach, and don’t be afraid to do independent reading of your partner’s conditions. It could help you get an idea of what their everyday struggle is like, and it’ll give you the ideas needed to make their days easier.
3. Don’t forget looks can be deceiving.
Your partner might experience more good days than bad. They’ll seem healthier, brighter, even bubbly at times whenever the medication and therapies are working. They’ll have more energy, be more organized and attentive, and might even do some things that were part of their old routine. These are the days that you might have to actively remind yourself that your partner is a chronic patient, because it is so easy to fall victim to the ‘normal days’. I’m sure even your partner is cautious of those ‘good days’, as a good day normally leads to a long, and particularly bad flare up (at least it does with me).
Being chronically ill doesn’t necessarily mean everyday you’re going to be as sick as humanly possible (without dying). It just means that your tank has a leak, so you’re constantly refilling that damn thing. Some days the leak isn’t so bad, so you have more reserves than you’re used to, but that doesn’t mean you won’t lose extra fuel later on. As a patient, you have to come up with different ways on how to explain your limitations versus a normal adult human, but at least we aren’t starved from creativity. There are times you are going to have to remember your partner’s limit for them, as we are sometimes guilty of pushing ourselves a little too far because we don’t know when our next good day will be.
4. Be Empathetic
And while I could use the word compassion, I believe empathy is the definition I am looking for. As a partner to a person with chronic health conditions, you’re going to quickly realize that they can’t keep up with you. If most of their issues are mobility, you’re going to want to make sure you slow down and plan the day accordingly, but don’t expect them to sit down as often, because sometimes the pain doesn’t go away even if they take a few minutes off their feet. Be mindful of how far you push them, and dial it back should it appear as though they are not recovering well after a ‘long date’. As someone with mobility issues, I find it difficult to walk far nor do I find it comforting to sit on a park bench, as my back and limbs suffer the most when it comes to my pain. My chronic conditions came late in life, and so these are new waters I’m navigating, but believe me when I say that most public chairs and benches are not comfortable to me. The longer I’m in them the more my flare up and the pain will last, so if you vet a restaurant ahead of time for your partner with chronic pain, they’ll be grateful.
A nice plush seat with a comfortable back can help, even if it won’t provide the kind of comfort your partner finds in their favorite seat or part of the bed at home – it would be better than a metal chair. And please avoid a bench. The lack of support can really do a number on someone with lower back pain. If you want to take them out for a stroll after, try and get the path ahead of time in order to see if it would be too lengthy for them to enjoy. Don’t be afraid to communicate your intentions. As nice as a surprise date would be, they’ll be grateful if you gave them a little bit of a heads up so that they can plan accordingly. There might be medication they can take to make the trip bearable, or they’ll dress more appropriately for their comfort so that the both of you can enjoy each other’s company without discomfort. Your partner will thank you, and appreciate the amount of effort you put in when you consider dates together. They will be especially grateful if they don’t have to suffer a flare up for a few days afterwards.
5. Find your support system, and communicate.
Being with someone who is chronically ill has its challenges. Admitting you need help to navigate through all the limitations doesn’t make you weak. In fact, I believe that it makes you stronger as it means you’re attuned with yourself, and you have a rare capacity for empathy. Not everyone is comfortable enough with themselves to admit when something is difficult to handle, though that doesn’t make you a bad person whatsoever, so remove those silly thoughts from your head. It is hard to juggle the needs of yourself and your ill significant other without appearing selfish. Trust me when I say that we battle with those thoughts often as we are more than aware that we require more attention because of our health. Most of us don’t even like being in the lime-light. We would much rather fade into obscurity, and be a background character because it is so unnerving to have so many eyes on you.
You matter just as much as your partner, and you don’t have to be ‘sick’ in order to feel entitled to your feelings, and thoughts. A relationship is a partnership, and your needs are just as important, if not more, as burn out is very real. The one thing you should keep in mind despite what certain days might reveal is that you are a loved one first, and a caregiver second. You might feel responsible to be your partner’s person whenever they’re having really bad days, but you aren’t their nurse nor are you their doctor. That means you’re only qualified to provide a shoulder to lean on, and that is completely okay. Sometimes all we need is a shoulder to lean on. We don’t need to constantly be reminded of our flaws, nor do you need to feel obligated to make sure we’re on the right treatment path. That is a conversation to share with their doctors if such concerns surface because your advice might not even be the right advice to give.
Talk to your partner. Talk to your friends. Reach out and find a professional. Whatever you do, help yourself first. Remember what they tell you when it comes to those masks that drop down during a flight? Put your mask on before you help the person beside you. That scenario can very well be applied to your relationship (should your partner be chronically ill, of course!). Unless we’re a danger to ourselves we have been doing pretty well in taking care of our own needs. Take care of your health – one of you is already sick enough for the both of you.
I am, by no means, an expert – but this is advice from a chronic patient to a person in a relationship with a chronic patient. Take a moment to read this yourself, and then sit down with your partner, and talk about it together. The best way to make a relationship with a chronic patient work is a lot of communication.
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