The Best Ways to Actually Be Helpful to Those Struggling With Illness


Over the past several years, my life took some unexpected turns as I struggled with various medical issues including Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), and digestive tract paralysis. The journey from fighting for a proper diagnosis to enduring countless tests, procedures, medications, therapies and hospitalizations to facing the depression and frustration that comes with losing so much more than just health… well, it has been difficult, to say the least. However, I’ve learned some valuable lessons along the way, and I have met great people who have made the healing and coping process just a little less lonely!

One thing I learned, and have since come to better understand, is how helpless (and even uncomfortable) family and friends can feel when it comes to supporting their loved one in their illness. They may show genuine care and concern, but their well wishes and good intentions are sometimes lost in translation. I, and others in the chronic illness community, often hear the same generic phrases like, “If you need anything, let me know,” “My thoughts and prayers are with you,” or “I wish there was something I could do.” Let’s be clear: any thoughts or acts of kindness are appreciated, and we do not expect anything more. It is understandably difficult to know what a person is going through and what they might need until you’ve truly “walked in their shoes.” But if, in your heart, you really want to make a difference and help someone during their fight to survive and thrive despite illness, I’ve included a few practical notes to take into consideration below.

(Note: moving forward, I will use “we” and “us” to indicate people currently struggling with illness and “you” as the aspiring “super-helper”; however, these roles are certainly fluid and can change at any time. The beauty is, those who have been helped in the past will be the most likely to step up to be your “super-helper” should the need arise!)

Visiting

Whether your loved one is hospitalized or homebound, visiting can certainly brighten their day. A “visit” doesn’t necessarily have to be physical — just checking in via a phone call, texts, Skype, etc. can be a great place to start, especially when distance is a barrier, or we are just not up for seeing anyone yet.

That said, stopping by in person does convey a strong message of your care and concern and helps us a feel a little less isolated. If you are thinking about making an in-person visit, how you ask does make a difference. It is easier for us to politely decline a visit we are not feeling up for than to accept one we would welcome. Instead of saying something like, “Would you like me to come visit?” try, “I’d like to come visit, if you don’t mind…” or, “What is a good day or time of day I can stop by?” The difference is subtle, but the former can sometimes make us feel like we are being needy or burdening you by affirming a visit. Rephrasing to the latter takes the pressure off us, and makes us feel like you want to come, versus you will come out of “duty” if we express desire.

In general, it is better to make shorter and more frequent visits than a single long visit if possible. It can be difficult to let a visitor know we’ve reached our maximum tolerance level of talking (or even sitting up), so check in periodically with a question like, “Would you like to get back to resting for a while?” Aim to stay long enough to move past the real small talk, but not much longer than a half-hour unless you are a direct family member or very close friend.

Hospital (and sometimes even home) visits can be tense or emotional; however, avoid feeling like you need to maintain a somber mood to show you understand the seriousness of the situation. We have all day to sit and ruminate on our medical situation or outlook and to let our fears and emotions get to us — visits give us the chance to give our minds a break and focus on something else for a change! Show interest, ask questions and get an update… but then move on. We want to hear about you — tell us what is going on in your life, how your day has been so far, what silly thing your child or pet did yesterday… remember, laughter is the best medicine so feel free to pull out a joke, reminisce about a memory, show a funny video you recorded or came across online or bring a few old pictures/album to share.

Hospital stays longer than a few days are extremely boring. We generally feel too sick to do much of anything but are unable to sleep due to the constant commotion of nurses, doctors, IVs, alarms, roommates, med passes, uncomfortable beds, etc. And we are so over watching TV/movies or reading! If you are visiting, one of the best things you can do if the floor/staff permits is to get us into a wheelchair (if needed) and out of the room. A little fresh air and change of scenery goes a long way, and usually ends up being the best part of the day for many of us. If stepping outdoors isn’t an option, then exploring the hospital — gift shop, activity room, chapel, food court, etc. is still worthwhile. If confined to the room, ask if we might be up for a quick card game or other activity that doesn’t require much “brain work” (i.e. Crazy 8, Uno, War, SlapJack, Jenga). Or, if you are hanging around for a bit longer, maybe challenge us to a coloring/drawing contest (some of us still are kids at heart!). If you are visiting us at home, consider bringing a pet for a little informal “pet therapy” time — especially if we don’t have critters of our own to cheer us up!

Gifts

When you come to visit, know that we are perfectly happy if you bring nothing but yourself. However, if you do want to bring, borrow or “gift” something, the more silly or entertaining, the better. Remember: we are bored and generally welcome a temporary “escape” from the reality that surrounds us. Some small, action-oriented ideas might include: a hand-held 3D puzzle, a funky new nail polish or lipstick, good ol’-fashioned play dough, an etch-a-sketch, silly stress balls, kinetic sand, an easy model kit, a mini nerf gun with a target, a paint-by-numbers picture, a clay sculpture, an activity or “I Spy” book, etc. If you prefer to go a more practical/traditional route, here are some great options: indoor plants (flowers are great, but plants can be taken home and the green can be “healing” to the soul), essential oils (maybe with a small diffuser), an extra comfy pillow (you can never get enough hospital pillows!), a calming white noise or nature sound box, a scented hand soap, lotion or body wash for shower time, hobby magazines (nothing too serious), a soft blanket or pajamas, a hand-held massager, etc.

Edible gifts are usually appreciated, especially while in the hospital. If you know of a home-cooked favorite like Grandma’s lasagna or Mom’s chicken noodle soup, by all means, feel free to bring it. Indulgent options like cupcakes, frozen custard or a dark chocolate truffle can certainly revitalize the tastebuds, too. And, bringing a seasonal dish — whether turkey with stuffing, pumpkin pie, egg nog or a corned beef sandwich – can help us feel like we are not completely missing out on the holiday cheer! If we aren’t feeling well enough or are unable to eat due to tests, procedures, etc., we can still freeze things for later. However, if we are having specific or prolonged difficulties with eating, skip the grub and stick with bringing beverages, suckers, mints and fun flavors of gum. Whenever possible, try to find out what kind of dietary restrictions a person might have before bringing or making something!

Prayer

Prayer can be a powerful gesture for many. But, there is a significant difference between saying, “I’ll pray for you” as more of a cliché or closing thought (especially since it seems there is surprisingly low rate of follow-through!) and actually taking the extra time to make it real and meaningful. If you and your loved one are believers in prayer, you may want to consider taking a step outside your normal comfort zone and pray with them, out loud, together. There is strength in numbers and unity, and the act of speaking and hearing prayers spoken is a very different experience than believing others may be praying for you. If you aren’t comfortable praying out loud, its OK – instead, try simply asking your loved one what, more specifically, you can target your prayer for. This adds an element of personalization, and makes the follow-through more likely. For instance, you could say, “I’d like to pray for you, but can you tell me what specifically you’d like me to focus on? Prayers you are able to complete this upcoming test which will help provide more information? Prayers for your insurance to cover this new medication? Prayers for your doctor’s minds or surgeon’s hands? Prayers for your anxiety to calm and be replaced by a sense of peace?

Practical Help

Visits, gifts and prayers are all great and do communicate your care and concern; however, what people struggling with illness often need the most (but may be too shy or proud to ask for) is real, practical help. If we are hospitalized, compromised or injured for a length of time, chances are we are going to have great difficulty keeping up on the day-to-day demands of life. This is especially true if children are in the mix! Even if we have spouses or significant others willing to step in, having them keep up with twice the home workload and responsibilities can quickly lead to burn-out. Dishes and laundry will pile, kids will get fed McDonald’s seven days in a row, appointments and school events will be missed due to transportation/time, bills will be late, grass or driveway snow will be a foot high… By helping our immediate family, you are helping us in the most meaningful way possible.

If you are able and would like to help in such a way, there are more and less effective ways to do so. Many kind-hearted people say, “Let me know if you need anything.” While this is a generous offer, it forces us not only to think about what we need help with (which inevitably leads to rationalizing or talking ourselves out of needing the help in the first place) but also to ask. And, as we all know, asking for help can be very difficult! No one likes to feel like a burden. So, if you are willing to offer help with the intent of not just “offering” but actually “helping,” try something a bit more specific like, “I can pick up/drop off/watch the kids a couple days this week if that would help…” or “If it’s OK, I’d like to come over to the house this weekend and do a little [cleaning/cooking/laundry/dishes/yard work]” or “Why don’t you make me a grocery list and I’ll go shopping this weekend and drop it off at the house?”

The above suggestions may seem most applicable during the acute or “flare-up” phases of illness, injury or disability; but, keep in mind, people in the chronic or “maintenance” phases may also be silently struggling, perhaps even forgotten… and could equally benefit from having someone check in periodically! There certainly is no “one size fits all” or right or wrong way to lend a hand to someone in need, but spending some time on the “receiving” end the past few years has definitely made me more sensitive to the needs of others going through difficult times. Practice makes perfect, and it is my hope that we all can step outside our comfort zones and begin our own transition from pseudo- to super-helpers — not only for illness, but for all types of needs. Together we are stronger!

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