32 Things People With Chronic Illness Want to Ask for Help With, but Don't


Chronic illness has a way of turning even the smallest of tasks into the biggest of hurdles. The pain, fatigue and other symptoms can often inhibit our ability to do everyday tasks like cooking, cleaning or running errands. While having these limitations can be frustrating in itself, sometimes we may feel additional shame or guilt for being unable to do chores most people might view as “simple” or “not a big deal.”

These negative emotions can have a huge impact when it comes to asking for help. It can be really tough to ask someone to help you do a task you perhaps never gave a second thought to before becoming ill. We asked our Mighty community to share some of the things they want to ask for help with, but don’t. For those with chronic illnesses, know that it’s OK to ask for help. And if you have a loved one who is chronically ill, maybe the following will give you some ideas for how best to help them – physically or emotionally.

 

Here’s what the community told us:

1. “Cooking. Healthy cooking, especially when I’m feeling my worst. If I’m stuck in bed, everyone eats frozen dinners. I’d love for someone else to be in charge of making sure there is plenty of fresh, healthy, prepped/cooked food in the fridge. When I eat better, I feel better, but I don’t always have the energy to take care of it myself.”

2. “I have an extremely hard time washing my hair due to my Ehlers-Danlos syndrome but I would be mortified to ask for help doing so, even though the thought of asking for help crosses my mind every time I’m in the bath.”

3. “Shopping. Not the usual grocery shopping (I can do that online), but all the other stores that are further from home and harder to get to. Taxis cost money, and public transport involves lots of walking which I can’t always do.”

4. “Massages. I have chronic tension headaches and TMJ disorder and my shoulders and neck are constantly hard as a rock and in pain. But not only is it awkward to ask people for a neck rub/squeeze, very few people are strong enough to massage as hard as I need or it is just an ineffective tease.”

5. “I can never bring myself to ask for help with my son. I’m worried I’ll hear I shouldn’t have become a parent if I need help caring for him sometimes.”

6. “I need help emotionally. I need an emotional support system so strong that when I want to give up, they remind me I have to keep going.”

7. “Lifting things. Working retail means I am expected to be able to lift and move boxes regularly. Having chronic pain makes it very difficult but I don’t want to look lazy. So I overcompensate by doing too much. Which makes the pain worse. But I still won’t ask for the help.”

8. “For me it’s as simple as company. It’s lonely being bed-bound. I’ve got carers and cleaners but there’s nothing other than seeing people that counters loneliness.”

9. “Listening to me vent about all my aches, pains and frustrations without either kind of listening to me or thinking I’m being a complainer or attention-seeker, and acknowledging I have every right to feel the way I do due to these debilitating illnesses.”

10. “Taking the dog out for a walk. He needs to go out four times a day. That’s 28 times a week and very draining, particularly when the energy level is so low and my early mornings are a nightmare.”

11. “What I have trouble with the most is keeping track of things… appointments, deadlines, things I need to do, organizing. I need a personal secretary to keep me on task. My memory is so bad from meds and malnutrition that even apps don’t help. By the time I go to add something to my schedule or to-do list, I’ve forgotten what it was I needed to add.”

12. “Embarrassingly… I am so fatigued and it’s to the point where I feel I don’t have the energy to wipe myself when using the bathroom. I feel there are days I could really use the assistance but I won’t ask anyone to do that for me.”

13. “Walking places. Whether it be from the couch to the bathroom, or from one classroom to the next, I really struggle with getting around. I just wish I could have someone to lean on (both literally and figuratively), yet I’m always too afraid to ask.”

14. “When I am unable to fall asleep due to lupus and interstitial cystitis, I always wish my significant other would cuddle me and hold me until I fall asleep. I never ask for it though, because I realize she has to get up to go to work the next day, so I leave her alone and let her sleep while I lie awake staring at the ceiling.”

15. “This is something I had to ask for help for. I have a suprapubic catheter and I have to wear a bag. I can usually manage to empty my day bags but my overnight bags can hold two liters of pee, which is heavy! Having to ask my partner or my parents for help to empty it is horrifying. But I just can’t do it on my own. The last time I tried the bag fell on the bathroom floor and exploded, like the biggest and grossest water bomb ever.”

16. “Someone to keep me company in the ER who won’t make me feel like I’m a pain in the butt.”

 

17. “Someone to clean out, organize, declutter, donate and sell… for the entire house. I know it would feel great to have a clean, clutter-free house but I just can’t get through all of the household stuff as is, let alone a full clean-out.”

18. “Validation. It is one thing to believe and understand how sick I am day in and day out, but I hate asking others to validate my pain – even though I need it. Tell me you believe me and that you are willing to sit with me for a while. I need to know you believe me.”

19. “Money. We are in debt from all of my treatments and doctor visits. I often go to work during a flare even when I probably shouldn’t, because I know we have bills to pay and I feel guilty.”

20. “Somebody to fill out and organize my medical paperwork who also organizes my appointments and advocates for me, especially when I have brain fog.”

21. “Dishes. Between my neck herniations making looking down difficult and painful, I have endometriosis and pelvic congestion syndrome which makes me hurt just standing. It sucks dropping plates because your hand goes numb.”

22. “Getting a service dog. I need one but don’t have the money for one and don’t know how I will be able to get one.”

23. “Just the simple things, honestly. Bring me a cold ice pack so I don’t have to get up. Bring me my meds in bed.”

24. “An attorney that will help me file for social security disability so I have a better chance of being approved the first time instead of getting denied without charging me hundreds of dollars.”

25. “Transportation. It may seem silly, but help getting around is crucial. Gone are the days when I could ‘just catch a bus’ or ‘take a walk’ like I used to.”

26. “I do ask! I know I need help and I ask all the time. I know my limits and if it’s too much I call in the troops. Husband, kids and my mom!”

27. “For someone to follow and remember my diet. What I can and can’t have. It’s the little things.”

28. “Doing my hair. My arms get so tired when I try to do something with my hair. I’ve resorted to just putting it in a low bun for the past week. It looks so nice when I actually have a good day and can style it with curls or straighten it.”

29. “With respect to my mental health, I do see a thorough team that supports and treats my physical and mental health, but I struggle with letting the world know that my mind hurts and is as troubled as my physical body. I struggle to nurture that part of my journey, and I struggle to truly speak out and ask for help when I need it in fear of being judged or not taken seriously.”

30. “Advocating for me to my doctors. I become overwhelmed and feel defeated when treatment after treatment is unsuccessful in easing my pain. I want to be heard, but I shut down instead.”

31. “Cutting up my food. Sometimes I don’t have the strength to do it myself and I struggle to eat my food. It’s embarrassing when you’re at a restaurant and you need to ask your partner to cut your food.”

32. “Housekeeping or cooking would be the two biggest things. When you’ve been vomiting all day, you don’t want to cook for everyone else. And then, because you haven’t kept anything down, you can’t clean, so your house is a mess. And sadly, because my house is such a mess, I don’t dare ask anyone to help because I don’t want them to see my messy house!”

32 Things People With Chronic Illness Want to Ask for Help With, but Don't

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