Receiving and giving help are basic human needs and behaviors. But somehow asking for help that is related to your chronic illness isn’t easy. It sounds like it should be straightforward: You need help and your loved ones want to help you — so why is it so tough to reach out and ask for it?
It starts young. “Many of us are trained from birth not to ask for help, to not be a burden on others, and it’s hard to overcome that cultural conditioning,” says Laurie J. Ferguson, PhD, a licensed clinical psychologist specializing in chronic illness, certified coach, and ordained minister. Dr. Ferguson is the Director of Education Development at the nonprofit Global Healthy Living Foundation (GHLF).
But even if you can get past those outside expectations that no one should ever need help and everyone will be perfectly healthy and capable their entire lives (seriously, where did that even start?!), you may be held back by internal feelings of inadequacy, vulnerability, and even fear, says neuropsychologist Sanam Hafeez, PsyD, Director of Comprehend the Mind, a diagnostic and treatment center for neuropsychological, psychiatric, and educational difficulties. Dr. Hafeez is a faculty member of Columbia University in New York City.
“I spent a long time trying really hard not to ask for help when I needed it. As I have gotten older (35 years with RA!) I realize it’s really ok to admit you need a hand (or at least a hand that doesn’t hurt!) sometimes,” tweeted CreakyJoints member Laura T.
Chronic Illness and Asking for Help: Why It’s Hard
Asking for help can feel tricky even under the best of circumstances but having a chronic illness adds another layer of difficulty. Having to ask for help can add to existing feelings of being vulnerable, exposed, weak, or out of control.
“You may resist help, feeling that you don’t want things to change and want to remain in control of your life as much as possible,” explains Dr. Hafeez. “Or perhaps you are afraid to share the reality of your illness, whether it’s because you’re in denial about how bad things have gotten or you don’t want your loved ones to worry.”
There are some common reasons that people with chronic illnesses may think twice before asking for help, according to our experts. Understanding these reasons can help you feel less alone and learn how to overcome your hesitations.
Note: While these are all normal and understandable reasons, if you find yourself overwhelmed to the point where you are unable to ask for help you may benefit from therapy to help you normalize your feelings and experiences.
- Mental health issues: It’s common for people with chronic diseases to also have mental health conditions, particularly depression or anxiety. These, in turn, often make people isolate and turn away from loved ones.
- Uncertainty: Should you ask for help now, or wait until things get really bad? “Unlike with an acute illness, you don’t know whether or not you’ll feel better anytime soon, and this uncertainty about the future can change when and how you ask for help,” says Dr. Hafeez. “You may worry about burning out your caregivers or taking advantage because you aren’t ‘bad enough’ yet.”
- Guilt: Chronic illnesses can lead to a lot of guilt — guilt over missing important functions, not being able to work and bring in income, being unable to be the parent, partner, or friend you want to be, financial strain, and on and on. When you already feel guilty or ashamed, you may be less likely to ask for help because you feel like you don’t “deserve” it.
- Stress: Doctor visits, financial worries, dietary concerns, changes in family dynamics, physical pain, medication management, new symptoms — chronic disease can add stress to your life in a wide variety of ways. This can create a vicious cycle, leading to anger, frustration, and feelings of helplessness or hopelessness. Stress can make it feel extra hard to ask for help.
- Practicality: There’s a lot involved in asking for help. You have to figure out what you need, contact people, coordinate schedules, express gratitude, and adjust for changes. All of these extra tasks when you’re already feeling overwhelmed can make asking for help feel like work.
Before You Ask a Loved One for Help
If you’re reading this, it may be because you know you need to be better about asking for help, but you’re not sure how to go about it. There are things you can do to make the process simpler, easier, and more successful for both you and your loved ones. Here’s what our experts recommend you consider if you’re struggling with how to ask others for help.
Know what you need
Being clear and specific about how your loved ones can help is essential. Make a list of tasks that you need aid with and prioritize them in order of importance to you. This may include:
- Attending doctor’s visits
- Grocery shopping
- Providing a sympathetic listening ear
- Running errands
The more information you have about what you need, the better people will be able to help you. Take a few minutes and gather the relevant information, like phone numbers for your doctor and pharmacy, dietary restrictions and preferences, adaptive equipment you need, medical records, and anything else that can help your caregivers.
Consider the unique strengths of those who offer help
Next, make a list of people who have offered to help you. (Put everyone on the list even if it’s not someone you feel particularly close to. If they made the offer, assume it is sincere.) Think about their availability, skills, and constraints — and see how that fits with your list of needs.
Create a schedule
Filling in a rough calendar of what help you need (and when) will help you better communicate your needs and answer any questions that your loved ones may have. This will save you time and energy in the long run.
Prioritize the relationship
Asking for help can change the dynamic of your relationships and it’s important to be mindful of your loved ones and their place in your life. For instance, it’s great to ask your partner for help but you may need to make sure you keep romantic aspects of your relationship strong. Similarly, asking children to help in age-appropriate ways can be good for both of you, as long as you put the parent-child bond first. (See below for our expert’s tips for asking kids for help while still being the parent.)
Go easy on yourself
There may be times when you’re so sick or overwhelmed that you just don’t know what you need. It’s okay to simply say that — your loved ones will understand. Having a chronic illness makes everything harder, including asking for help, so be patient with yourself during the process.
Tips for Asking Adult Loved Ones for Help
Now that you’re ready to make the request, here are some tips from our experts and from people with chronic illnesses on how to ask for the help you need without exhausting yourself or feeling like a burden.
Be honest about how you are feeling
Hiding the seriousness of your condition or the severity of your pain or disability makes it much harder for people to give you the help you need. Be honest and clear and don’t expect them to read your mind or figure it out based on your symptoms.
It can feel very vulnerable to open-up to your loved ones in this way but it’s necessary, says Megan H. 45, who has postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos, and inflammatory arthritis. “I have learned that I can’t assume that people know how I feel,” she says, “I have to share that with them.”
Make requests specific
Define the task you need help with, when you need the help, and about how much time you expect it to take. Example: “I’m looking for someone to drive me to my specialist’s appointment in San Jose, at 2 p.m. on Monday. I’d love it if you could wait with me and bring me home as well. It should take about two hours total.”
Decide what feels comfortable to share
People like to know why they are helping — especially if your illness is “invisible” — but they don’t need to know all the details of your illness. Decide what you are and are not comfortable sharing with others about your health so that they feel like they are being kept in the loop but you don’t feel exposed. Example: “I’m having surgery on my back Friday. It’s to help fix complications of my arthritis and should help reduce my pain. I’d really appreciate a meal or two over the weekend since I won’t be able to stand to cook.”
Educate them about your symptoms
“I have taught my family and friends to be on alert for telltale signs I need help,” says Megan H., including acting stroke-like, sounding drunk, not moving much, appearing like a wilting flower, or moving very slowly and/or unsteadily. “These symptoms are easily treated with salt, electrolytes, and rest,” she says. “I’d much rather they do this before anyone feels like they need to call 911.”
Spread the love
Resist the urge to only reach out to your partner or a select few loved ones for help. Having a larger support group prevents caregiver burnout and allows you to spend time with lots of people who care about you. If you have a smaller inner circle, it’s okay to reach out to the same few people repeatedly — as long as you keep open communication with them about their needs.
Reach out to support networks
Look beyond your immediate circle for others who can help through volunteer networks. Religious, community, online, or illness-specific support groups can be a valuable source of help and comfort. They may even be better equipped to help with a specific need than, say, your partner.
Share the work
Sometimes you may not need someone to do a whole task for you but rather just a little help or company while you do your tasks. “I get the most help from the friends that are willing to just be with me in mundane daily things like going to the grocery store or tidying the house,” says Ame P., 28, of Mississippi, who has fibromyalgia and chronic mental illness. “They don’t even have to do the work. It just helps to have them there to talk to while I do it. [It] takes me out of my own head. They are also amazing listeners and know to ask if I want advice or just an ear.”
Whether it’s the first time your cousin brings you dinner or the 10th, be sure to thank them. “I deal with feeling like a burden all the time, but I also show appreciation and gratitude to those who help me,” writes CreakyJoints member April D. on Instagram.
Thank-you cards, small gifts, or returning a favor aren’t necessary every time someone helps, but they are a nice gesture sometimes. Example: “You are so wonderful to make dinner and clean up the kitchen when I’m having a painful flare-up. I’m so grateful for you and I’d love to take you out for ice cream when I’m feeling better.”
Give them space to reply
Many people freeze when put on the spot with a request. If possible, write your request in a text or an email. This gives them time to think about it before answering. If you’re speaking to them over the phone or in person, give them some time to answer. Example: “It would be great if you would be able to watch my baby for a few hours on Saturday. Feel free to check your schedule and get back to me.”
Give yourself a pep talk
It’s understandable to feel nervous or anxious before asking someone for help. One way to overcome these feelings is to give yourself a little pep talk first. “I tell myself, ‘You can do it! You have done much harder things than this!’,” says Valentin U., 50, of Moldova, who has chronic pain and knee problems.
CreakyJoints member J. Paschenfoy told us on Instagram that she tries to consider it “from the perspective of my loved ones. If they were suffering physically, and just needed a little bit of help, wouldn’t I be absolutely more than willing to help them? Of course!”
Take people at their word
Avoid saying (or thinking) things like “Are you really sure you want to help?” or “You probably are too busy.” These phrases can make your loved one feel guilty and like they need to convince you. Instead, believe people when they say they want to help. Example: “Thank you so much for offering to do my grocery shopping! That will be such a great help to me.”
Have a script
Not sure what to say in the moment or worried that you’ll forget something important? Coming up with a script is something that really helps Lizzy V., 43, of South Carolina. She struggles with hearing loss, chronic depression, chronic pain and fatigue, and short-term memory loss. You can write it down, save it in your notes on your phone, or even create an email template so you can just fill in the blanks.
If your particular need is flexible, offer your loved one some options to make it easier on their schedules. Example: “If you wouldn’t mind picking up my medication for me, that would be great! I just need it before Wednesday.”
Ask people to check on you
If you worry about reaching out for help too often or you aren’t sure what you need, you can ask your loved ones to check in with you periodically via a quick text or call. The message will give you a pick-me-up, an opportunity to connect, and a chance to ask for help. “My friends do daily check-ins with funny pictures of gifs when they know I’m in a down period,” Ame P. says. “Then I know they are there if I need them.”
Be okay with a “no”
Your loved ones want to help you but if they can’t for some reason, it doesn’t mean they don’t love you. Respect their answer and be grateful even if this time they can’t help you out.
Know how to say “no”
There are times when someone will offer to help in a way that actually isn’t helpful to you. It’s perfectly okay to tell them no thanks. You may offer an alternative if you feel like their intentions are good. Example: “I really appreciate the offer of sending me pizza but that food can cause my pain to flare-up even more. But I’d love company if you’d like to come over and hang out.”
Caregiving can make for blurry boundaries, particularly between loved ones. Avoid hurt feelings and conflict by making clear boundaries. Accepting help from someone doesn’t mean you have to accept other things from them or tolerate abuse.
Consider safety issues
If your illness impedes you to the point where doing certain things like cooking or driving are dangerous, then it’s absolutely time to call for help. Then it’s not just about you, it’s about keeping everyone safe, says Megan H. “For instance, I have no problem asking for rides as it keeps everyone on the road safer than if I try to drive,” she says.
Asking Children for Help
Your first instinct may be to avoid ever asking your kids to help but if you have a chronic illness, usually everyone in the house needs to be a helper. And that’s not a bad thing. Children are natural helpers and often enjoy the extra time with you. What an adult may see as a burden, a child may see as a fun experience.
“Asking children to help you teaches them compassion, teamwork, and life skills,” says Dr. Ferguson. “It can be a very loving and empowering experience, bringing you closer together.” Asking kids for help is different than asking adult loved ones. Here are tips from our experts on how to ask your children for help.
- Keep it age-appropriate: Know what tasks are appropriate for your kids’ ages and stages of life. For instance, a 3-year-old may enjoy matching socks while you fold laundry; a 10-year-old may be able to take over caring for the house plants; a 13-year-old may like to play chef and cook a meal; and a 16-year-old may like to practice their driving skills while running errands for you.
- Make it fun: For little kids almost anything can be a game. Make a chore fun by “game-ifying” it. You can create silly rules, sing a song, have a fun reward afterward, or make a video of it. Example: Picking up toys can become a pirate scavenger hunt.
- Use it as a teaching experience: Asking for help is a great opportunity to teach children life skills like cooking, cleaning, childcare, and finances. Take the time to teach them in an age-appropriate way how to do each thing. Even if you can’t do all of it with them, be present and helpful.
- Balance caregiving with fun: Your illness will change how you parent but it doesn’t change the fact that you are the parent. Even children who may have to help out more at home than their peers with healthier parents still need to feel and act like kids. Give them opportunities to help but make sure you’re balancing it with fun times.
- Look for signs they are overwhelmed: Kids show stress in different ways than adults so be on the lookout for signs that they may be overwhelmed with helping, including trouble sleeping or eating, doing poorly or acting out in school, fits of anger or unexplained crying, regression in developmental milestones (like potty training, or expressing depression or anxiety.
Tips for Asking for Help When You Live Alone
Having live-in help via a partner, children, or roommates can make asking for help more convenient but what if you live on your own? “In this case it’s even more important to reach out to others for help, so you don’t become isolated,” says Dr. Ferguson. Most of the tips listed above are useful regardless of your living situation but here are some extra tips from our experts for asking for help when you’re solo.
Ask to be invited to social events
Isolation can be a disease all on its own, causing health problems and worsening existing issues. Humans are made to be social and it’s important to include social time on your list of needs.
It may feel scary at first to ask to be invited to things, but people may assume that your illness means you can’t or don’t want to hang out. Show that you are interested in joining game nights or going to dinner or the movies. Be clear about what your needs are, and let your friends know how to help.
Have a list of emergency contacts
Find people close to you in proximity and close to you emotionally that you can call when you need help. Keep the list stored on your phone — you can create a separate “helpers” list in your contacts — and print it out. Fill out the emergency or ICE contact on your phone in case someone, like an emergency worker, needs to ask for help for you.
Make friends with your neighbors
Make a plate of cookies and/or write a nice note introducing yourself to your neighbors. It’s worth the time and effort to connect with those who live nearby and maintain those relationships. Some people may not be interested but many will appreciate the gesture. Give them a simple heads up about your illness so if you need help in the future, it won’t be a surprise.
Ask loved ones to check on you regularly
Whether it’s a quick good-morning text or a weekly visit, having regularly scheduled check-ins with loved ones can be reassuring to both you and them. Set a protocol for what they should do if you don’t reply within a certain time frame or if you don’t answer the door.
Give loved ones a spare key
Give a couple of trusted loved ones a spare key to your home or your garage code. This way they can come inside to check on you if you are unable to answer the door. They can also use it to pick things up for you, feed pets, or water plants when you’re not home.
When to Seek Professional Help
Loved ones can do a lot of things to help out but they can’t do everything. If you find yourself in a physical or emotional emergency, you need to seek professional help.
- Signs to look out for include:
- Suicidal ideations
- Uncontrollable pain
- Inability to feel joy or happiness
- Loss of interest in hobbies
Also, remember that asking for help is a learned skill and it can be extremely difficult for some people. Talking to a therapist trained in chronic illness care is a great way to work through your worries and practice talking about what you need.
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