31 Tips for Helping Your Chronically Ill Loved One
Helping someone with a chronic illness can be extremely difficult. You admit that you don’t understand what they’re going through, you feel like you’re losing your loved one to this illness, and you might be afraid to say the wrong thing. On the other hand, receiving help when first developing postural orthostatic tachycardia syndrome (POTS) can be a difficult and humbling process as well. I’ve lost everything that resembles my old life and I’m afraid we might lose you, too.
Unfortunately, many with POTS often do lose loved ones, mostly because of pure misunderstanding. So you can imagine the immense gratitude I felt when I started to receive an overflowing amount of messages on my POTS awareness Instagram account, asking for tips on how to help their loved ones with POTS. These message were received mostly from boyfriends and husbands who felt like no matter what they did to try to help their girlfriends and wifes, they felt like their attempts were shutdown or caused more frustration. I was really appreciative to learn from their perspective and decided to compile a list to help those who were interested in learning more about how to help a loved one with a chronic illness.
No two people with POTS, or any chronic illness, are the same. Please remember that your loved one is still a unique individual with their own wants and needs. Therefore, there is no guarantee that all of these will provide your loved one with comfort.
1. Listen. Create a safe environment for them to be heard without dismissive statements like “be positive” that shut down the conversation. It’s OK to admit that you don’t know what to say. When in doubt, saying, “I don’t know what to say right now but I’m sorry you’re struggling,” will work just fine.
2. Google their illness to educate yourself on the basics. It shows that you care and want to understand more about what they’re going through. Just don’t make the mistake of thinking that you’ve Googled it more than they have and start suggesting treatment options. I can almost guarantee that they’ve seen all the same links you have.
3. Please don’t stop inviting them out. Even though your friend or family member with a chronic illness may have to cancel a lot, they’ll appreciate feeling included. They hate canceling on you and wish they didn’t have to. They want to be a more reliable friend but it’s their illness that’s undependable, not them. Try to plan activities they can do that can be adjusted if needed.
4. Don’t try to fix them and please don’t feel helpless when you can’t. Doctors with over 10 years of schooling have yet to cure them, so you definitely won’t be able to and it’s not your job. Please be their friend, or whatever role you played before they got sick, and don’t take on the doctor role. If you have become their caregiver, try to remember that you’re also their friend, family member, or spouse.
5. Don’t be surprised if you don’t hear from your loved one with a chronic illness when they have a need – even after generously offering “let me know if there’s anything I can do to help.” Many of those with a chronic illness try to fight for independence even if it’s hard on their bodies. It’s hard for them to ask for help because they don’t want to seem like a burden. If you want to help, bringing over a meal or doing something for them that will save their energy without them asking would make their day.
6. Understand that being at the mercy of an incurable illness is a never-ending cycle of grief. When you lose your health, you experience an incomparable loss: loss of self, loss of future dreams, loss of health, and perhaps loss of job and/or school. Your loved one with a chronic illness will sometimes get frustrated, sad, depression and anxious when coping with their chronic illness. Validate their emotions and don’t take them personally. Allow them to feel whatever they’re feeling without pressuring them to constantly “stay positive.”
7. Don’t be afraid to ask questions. Ask your friend or family member with a chronic illness how that particular symptom feels or what it’s like to deal with what they’re experiencing. These questions help you better understand and makes your loved one feel cared for.
8. Pay close attention to your own physical health to avoid being around your friend when you’re sick. The common cold or flu might not be a big deal for you, but for someone with a chronic illness, it can put them into a big flare. If you normally wouldn’t think twice about a stuffed up nose, start thinking whether or not it could be a cold, and give your friend a heads up and the option to reschedule if they don’t want to risk it.
9. Be physically present. Go see them for short visits and don’t expect them to do much or have to play hostess. Having a chronic illness can be completely isolating so your physical presence helps them feel less alone. Lying down and talking can be extremely therapeutic for the both of you.
10. Please don’t become desensitized to their illness. And please do not make the mistake of thinking you’ll ever fully understand just because you’re their caregiver or have been there every step of the way. They appreciate you more than words could express, but witnessing their illness second-hand is nothing like actually living with it. It’s an invisible illness, so no matter how physically present you are, you’ll never fully understand the agony and isolation. And that’s OK, they wouldn’t wish this illness on anyone. They would do anything to be in your place.
11. Don’t make them feel guilty for what they can’t do. When you’re frustrated about what your friend or family member cannot do, try to remember that it’s far more frustrating for them. Develop and maintain an additional network of people who are passionate about the same things you are, and who are able to do them to relieve the pressure put on your friend or family member with a chronic illness. Chronic illness is your common enemy, so let your joint frustration fuel advocacy projects instead of fights between you two.
12. Allow them to use humor to cope with their illness, but be careful about joining along. “Don’t tease her and call her ‘hop along’ or ‘slowpoke.’ Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, ‘A man’s spirit sustains him in sickness, but a crushed spirit who can bear?’” -Lisa Copen’s “50 ways to Encourage a Chronically Ill Friend”
13. “Accept that her chronic illness may not go away. If she’s accepting it, don’t tell her the illness is winning and she’s giving in to it.” -Lisa Copen’s 50 “Ways to Encourage a Chronically Ill Friend”
14. Don’t share information about your friend or family member’s illness with others without asking them first. Some people are very open about their illness while others consider it a private matter.
15. Create and maintain healthy boundaries with them and their health. Anger can result from daily chronic pain. If your friend 0r family member takes this anger out on you, make sure you’re able to give grace, yet let them know that it’s not OK to treat you in this way. Don’t get in the habit of becoming their punching bag – that’ll cause a lot of resentment.
16. Follow up with them about those test results they were nervous about, or that new doctor they saw. Showing that you pay attention to those small details will really make your loved one with a chronic illness feel cared for.
17. If they’re going through a flare, there are a lot of ways you can help your friend or family member save some energy. You could bring over some home cooked meals (make sure to ask if they have any dietary restrictions), you could take their kids for an evening to give them some time to rest, you could go over and help clean, or just ask if they would like some company and if they would like you to pick up anything from the grocery store on the way over.
18. Having a chronic illness can be a very lonely experience. If you haven’t caught up with your friend or family member with a chronic illness in some time, send them a quick text letting them know that you’re thinking of them. While you’re off at work, school, or living a busy life, their days at home go by much slower. You might not realize how long it’s been since you’ve reached out to them – but when the days feel like years, your friend or family member will realize.
19. If both you and your friend or family member with a chronic illness believe in God, then pray for them and let them know when you do. Don’t become so desensitized to their illness, and the fact that they haven’t been healed that you neglect to lift them up in prayer. Praying to a healing God that hasn’t healed your friend yet will also teach you a lot about the complexities and mystery of God’s will and character. You can also ask if your friend is OK with you putting their name down on a prayer list so others can pray for them.
20. If you’re in the role of caregiver part or full-time, make sure to prioritize your own self-care. Your own physical and mental health are important. You cannot serve from an empty vessel.
21. Be careful about any ableist language you may use that might influence your friend or family member to question your empathy toward their situation. If you are complaining about another friend’s pain, or rolling your eyes and questioning the validity of another person’s experiences, your friend will start to wonder what you say about them behind their back. You may think it’s OK because the person you’re complaining about doesn’t have symptoms as severe as your friend or family member’s, but they will quickly catch on and become hesitant to share with you.
22. Avoid pity gifts, like “get well soon” cards, if their illness is chronic (and not acute). However, there are tons of gifts that can offer up the same intended support that your friend or family member will probably love. You could donate to a charity that promotes awareness for their illness in their name. Some other ideas could be a cute journal, a cozy blanket, and some self-care gifts.
23. Don’t make jokes or draw attention to the little things they may have to do in public to care for their illness. Whether your friend or family member has to pull out a heart rate monitor at a party, sit on the ground in the middle of a shopping mall, or order a super complicated meal at a restaurant, your comments will just make them feel even more isolated from the outside world. Your friend or family member already knows that the necessary quirks they’ve developed aren’t considered normal by society, so please don’t make them feel even more embarrassed about this.
24. Keep their abilities and limitations in mind when making plans. When choosing a place to hang out, ensure that it’s accessible for their needs and call ahead if you’re not sure. They might not be able to come out a lot, so when they do, it’s important that their energy is spent in a place where they feel comfortable.
25. “Don’t say, ‘Let me know if there is anything I can do.’ People rarely feel comfortable saying, ‘Yes, my laundry.’ Instead pick something you are willing to do and then ask her permission.” – Lisa Copen’s “50 Ways to Encourage a Chronically Ill Friend”
26. If you ask “How are you?” and they answer with “Fine,” please remember that your definition of fine is entirely different from theirs. It’s safe to assume that your friend or family member with a chronic illness is always experiencing more symptoms than they care to list off. Those with a chronic illness often minimize their symptoms so they don’t look like they’re seeking attention. So, when you’re sitting across them at a cafe and they’re smiling, that doesn’t mean they’re not in severe pain, pumping their calves to prevent passing out, or nervously scanning the room for all exit signs.
27. Check in on your friend or family member with a chronic illness. They might not always have the energy to reply, but they’ll appreciate you making sure that they’re OK. Also try to understand that their symptoms may prevent them from always reaching out to you first, but that doesn’t mean that they don’t need a friend.
28. If your friend or family member with a chronic illness shares an article about their illness on social media, read it to educate yourself. Those with a chronic illness often see tons of articles about their illness in their news feeds (if they follow awareness pages and support groups) and are often torn between whether or not they should share them. They don’t want to be known as the person who overshares. so when they do share that article, it’s because they want you to read it. If you’re comfortable doing so, share the article on your profile as well to help spread awareness.
29. “Ask, ‘What events in your life are changing and how are you coping with the changes?’” – Lisa Copen’s “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend”
Whether it’s a new treatment, side effects from a new medication, new doctors, decreasing current medications, or experiencing a flare of symptoms, your friend or family member with a chronic illness most likely experiences a lot of ups and downs when it comes to their health.
30. There are many ways you can help advocate for your friend or family member with a chronic illness. They do not have to fight this illness alone. If they agree, you can accompany them to doctor appointments. Educate yourself in order to be their patient advocate. You can organize a fundraiser to raise money for an organization related to their illness, share posts on Facebook, and just do your part to be in this fight to spread awareness in daily conversations. Those with a chronic illness often don’t get the charity runs and awareness bracelets dedicated to them; they’re often the unsung and unseen heroes.
31. Keep an eye out for their mental health. If you notice any changes in their mood that are out of the ordinary for them, encourage them to talk about it. Those with chronic illnesses often experience depression and anxiety as a result of the continuous pain this life includes. Encourage a nonjudgmental open-dialogue about mental health. Don’t be afraid to ask questions and encourage them to seek help if needed.
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