What is the Hardest Part of Living with Illness? Your Responses!

What is the hardest part of living with a chronic illness? Well, it depends on who you are asking, what time of day you are asking, and a million other factors. Yet, we all have so much in common and we can understand the challenges of the friend beside us even if we don’t deal with it ourselves. We all feel “called” to certain things, and not being able to do them–from homeschooling to making dinner–is difficult when we don’t feel we can do what we, and others, expect from our self. And the fact that it is invisible . . . well, that makes many of the struggles even more painful as we feel we must justify a housekeeper or a parking placard.

We asked you, “What is the hardest part of living with illness?” and here are your responses. As you read through them, be sure to send up a prayer for our brave participants who shared their hearts.

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“One of the hardest parts is that chronic illness seems to present an opposite picture of my character. For example, I am fairly organized, love keeping my home running smoothly, making home cooked food, and having a reasonably tidy house. Because I do not have the capacity to keep my house very tidy at times and unable to clean very much, people have judged me as being lazy and unorganized and this really has hurt me very deeply.” Lee, chronic fatigue syndrome

“Missing out on so many activities because of my illness. Your healthy friends say to you ‘let me know what I can do for you,’ but you don’t hear from them. You make the most of the days that you have because you know it is a gift from God and it is to be treasured and you do not when it will be gone.” Carla, multiple sclerosis, chronic pain

“Having more dreams than I have physical ability. I’m learning how to chase my dreams in different ways.” Kathy, mixed connective tissue disease, diabetes, and more

“People forget and assume you should be doing more than you are. Or you have to explain over and over again why you need to space out the tasks you take on, over a longer period of time to allow for flare ups and to keep from really crashing. Also, lack of sleep associated with uncontrolled pain and neurological symptoms takes a heavy toll on my emotional state and relationships.” Sherri, lupus, fibromyalgia, rheumatoid arthritis, Sjogren’s

“The hardest part of living with a chronic illness is not being able to do the same things other people your age are doing. I’m only 24 and have had this illness since I was born. I’ve never been able to run and play sports like the other kids my age. I always had to sit on the sidelines and watch, which wasn’t all bad. It was fun to sit there and cheer for my friends, but I can’t deny feeling a little left out.” Erin, multiple hereditary exotoses

“Friends and family think you are doing well cause you look good from the outside, but your body is hurting every day from the inside where no one can see.” Evelyn, chronic pancreatites

“Personally, I am not one to talk openly about my mental illness. Of course there is stigma surrounding mental illness and that impairs communication, but that is not why I “choose” to remain silent. I don’t want to call attention to my illness for fear I will be considered “weak” yet my greatest need is to be able to talk about it without fear of judgment. I could, however, explain any misconceptions about my particular illness and about chronic illness in general if I felt “safe” enough to express that which is kept hidden. I feel I only add to the misunderstanding of living with invisible illness because I am hesitant to talk about it. I want to help others better understand invisible chronic illness, and in doing so, I think that I will feel more secure with my own.” No name given

“There are many hard things about living with chronic illness. What I consider ‘the hardest’ changes from time to time, but one thing that’s really bothering me right now is the looks I get when I pull into a handicap parking spot with my state-issued PH plates and get out with my three kids and walk into a store. I do NOT LOOK SICK in any way and I feel like people are judging me, thinking I’m abusing the plates, maybe questioning if they are even mine. They have no clue about the pain I’m feeling with every step, the exhausted effort I’m putting forth simply to get through this trip to purchase groceries to feed my family. They don’t know that even if I can make it into the store alright, that by the time I’ve checked out I’ll be staggering back to my van, ever-so-greatful that it’s close enough to the door that I can make it there without throwing up from the nausea and fatigue I’m struggling under.” Jennifer, chronic fatigue syndrome, fibromyalgia, endometriosis, PCOS

“I am 70 years old and really want to enjoy my remaining years. I have a handicap emblem for my car which I use ‘as needed.'” Jerry, peripheral neuropathy

“When we go somewhere like Disney I can walk almost normally first thing on the morning; my wife is not handicapped. People look at us, and have often commented as to why we feel we deserve to park so close, when they have to walk so far. Of course they are not around later as I slowly make my way back to our van. But the hardest part goes beyond the invisible illness to the fact that I own my illnesses. Diabetes, neuropathy and the related depression which require large amount of medications, and still are incurable and limit my former active life style. I have found that volunteering my time and efforts to help others deal with like problems has helped me deal with my own.” Name withheld

“Working, I’m in so much pain all the time, but working at a job really makes the pain go way up.” Cindy, arthritis, neuropathy

“It is hard to pick just one thing that is the hardest part of living with a chronic illness. I think loss is the hardest part for me. Loss of health, loss of the ability to move about freely, loss of friends, loss of the ability to work, loss of self confidence, loss of financial security.” Ruth, young onset Parkinson’s, fibromyalgia, osteo arthritis

“The hardest part, hands down, is having to deal with family members who don’t believe, who doubt and test and constantly tell you what you are experiencing isn’t real and you’re faking it. Then if you have a good day – heaven forbid you should have a good day! – and can do anything you normally can’t, it is taken as ‘proof’ that your illnesses are fake. It’s a lose-lose situation.” Sharon, arthritis, asthma, fibromyalgia, allergies

“The up and down of daily living. It’s hard to plan anything. You take one day at a time. You can’t think about what others are thinking, when they see you do things one day and then are bedridden the next. They do not understand. I do not understand. I do know that God’s unfailing love is there for me and my family continues to stand there for me. Praise God!” Carla, multiple sclerosis

“The hardest part is the invisible part. I have people say I can’t be sick as they can’t see it or that it is different from others. And they can get really uptight about it all. They don’t understand when fatigue just overwhelms me, I should be able to keep doing everything! HELP!” Lee, arthritis, fibro, migraines, headaches, asthma, IBS, etc

“The hardest part of living with an invisible illness, isn’t the fact that its invisible. I have a wonderful family and wonderful friends. If you don’t believe me, I don’t care. You do not make an impact in my life, you do not live with me, and you do not help support me. Anything that is said hurts, but is soon forgotten.” Christine, reflex sympathetic dystrophy, complex regional pain syndrome

“What hurts the worse is when my invisible illness allows me a good moment, and my son shows so much joy in that moment, and then the next moment I can’t even get out of bed. No two moments are ever the same, and even though I look like I could go out and play at any moment, my son will never know if my invisible illness is so bad that just coming to ask me causes me to snap.” No name given

“Being judged for what can’t be seen. I am overweight, so the standard response I get from people is if I’d lose the weight, I’d feel better. That’s like asking ‘Which came first, the chicken or the egg?'” Doreen, rheumatoid arthritis, fibromyalgia

“I think it is seeing people you haven’t seen in a while and them expecting you to be your old self.” Nancy, rheumatoid arthritis and tendonitis

“Being ignored/insulted/neglected by medical world, which makes everyone else think your illness must not be real. I guess it’s other people’s doubt about your suffering, and the resulting loneliness.” Sheila, lupus, fibromyalgia, chronic fatigue syndrome, diabetes, trigeminal neuralgia

“Having so many things that I would like to do and not enough energy to do them. The energy problem also affects my ability to be social and to have less isolation. I guess this is two things, not one, but the isolation is really hard.” Sherri, fibromyalgia, orthostatic hypotension, Hashimoto’s disease
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“The hardest part of living with a chronic illness is having to cut back on the amount of housework I can do. I had to cut back on activities that I used to such as church activities and not to mention being able to go on long trips and vacations with my family. But God has been good and He is helping to hang in there.” Vickie, fibromyalgia, panic and nerves eisorders

“Unrealistic expectations of me. My current family and extended family ‘angry’ that I can’t do the things I used to. ‘I want my Mother back,’ stated my daughter.” Bob and Mary Ellen, fibromyalgi, myofacial pain, arthritis, IBS, asthma, severe depression, anxiety, nerve pain from neuromas (feet), etc.

“I am 59 but look at least 10 years younger and I try to look my best at all times, so the hardest part of living with the invisible illnesses is my own perceptions of myself. Some days I feel almost normal and then I think maybe I am getting well. I look in the mirror and expect more of myself even though I am well aware of how I feel on many other days. I have a hard time balancing fighting for my health and leading as normal a life as possible, spending time with my husband, grandchildren, children, friends, run my home, wonder about having ministry influence, and yet accept where the Lord has me.” Sheryl, chronic myofascial pain, plantar fascitis, IBS, spinal curvatures

“I think the hardest part of living with an invisible chronic illness is that people don’t believe that you are as sick as you say you are. It took six years and many doctors and tests to finally get a diagnosis for my fibromyalgia. And just last year, I found a doctor that understands ALL of the issues that go along with having a headache all day every day. It’s bad enough when your family and friends don’t believe you. But, when the medical community turns their back on you and ignores you that really effects your self-worth.” Carrie, chronic saily headache, migraines, and fibromyalgia

“I have only been a Christian for seven years and I am glad that I have my firm foundation to support me during my rough times. I don’t know what plans God has for me, but I know that ‘He will use my pain to birth my passion’ as Beth Moore put it.” No name given

“I am 55, and older people actually tell me I look okay, even though I am walking poorly, or sometimes with a cane or walker. I get nasty comments when I park in disabled space, legally of course. Am a lot different person when I come out of store however–look and feel like someone else. Elderly don’t believe me when I say I collect SSDI for 5 years now, worked all my life, then disabilities much worse. Have bad days and worse, no one understands chronic pain, esp when you are under 60, have had juvenile RA since age 15, but only slowed me down a bit, always active until my late 40’s. Typical progression according to docs., not unusual to have other things added to bad bones and muscles. even church going do not understand my inability to go there, to drive much, or do simple things they can do. very frustrating. very lonely. I am a widow – have 4 grown kids and 5 grands. I see on and off.” Marjorie, juvenille rheumatoid arthritis, lupus other spinal probs, fibromyalgia, asthma, blood disorder, chronic pain

“I think the hardest part is probably that people don’t understand. You look fine, so they have expectations about how you should be able to behave, or what you should do, when they really have no idea how difficult things might be for you. If you try to explain, you look like you are making excuses.” Fiona, chronic back and neck pain

“The hardest part is to be left behind from my family. (Especially during the summer trips!). I am unable to travel or enjoy most activities, so my hubby takes the kids out to enjoy their summer. I’m left behind realizing how lonely it is to be so sick, a lot of the time! I can’t enjoy my beautiful children and see their smiles as they enjoy an amusement park, family reunion, etc.” Kelley, degenerative disk disease, endometriosis, severe joint pain, severe chemical and food allergies

“The hardest part for me is that my own adult daughter still thinks of me as being young and strong and I’m almost 57 years old; yet I feel like I’m 90. I’ve been a single parent since she was three years old and raised her without one penny of child support. She doesn’t understand the pain and exhaustion that I go through every day. I’ve had Fibromyalgia and Chronic Fatigue since 1991 which were both brought on after I was in a car accident. However, eight months ago, I became extremely ill and lost 40 pounds in 1 1/2 months. I had to go to the emergency room 4 times in one month and had 5 IVs due to severe dehydration. I still don’t have a diagnosis as to what was wrong and I underwent numerous medical procedures. I’m still recovering from the illness that had me nearly bedridden for two weeks straight. It took me five months to finally get an appointment with my primary doctor (I had to see nurses prior to that).” Barbara, fibromyalgia, osteo-arthritis, asthma, herniated disks, migraines, IBS, chronic fatigue syndrome

“The hardest part of living with invisible illness is slowly watching the World go by, and see people leave your life. The L O N G sleepless nights filled with prayer and innermost moanings to a God you can’t feel right now. Your memories of able-bodied days Your knowledge that your loved ones are tired of dealing with your illness and knowing you’re a burden.” Jill, 3 spinal surgeries, diabetes, epilepsy, gastroparesis, degenerative disc disease, ostioparosis, nuropathies, etc.

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So, what can we do with all of the emotions? What do YOU do to get OVER those feelings of not getting everything on your list done, or frustrations of having to explain why your house isn’t clean? Remember Joshua 1:9: “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” How can we turn these emotions from discouragement and fear into strength and courage?