Having a chronic illness is the pits.
It just is.
I want to tell you how I'm over-coming (and I am), but truly it is just plain hard.
The most difficult aspect is the guilt and shame that washes over me.
I feel guilty that I need to rest instead of playing outside with the kids.
I feel ashamed that I am sick even though I champion health and wellness.
I feel sad that I have to preemptively say no to events and activities because they will be too much for me.
Some days I don't feel like me.
Even though this is not encouraging for you to read, I hope it will help those with chronic illness know that others feel as they do. If you know someone with a chronic illness, perhaps this will help you understand them a little better.
Many people suffering with a chronic illness don't look sick. Yet, they struggle with even the simplest of tasks. Things that may not require any effort from most people, take all the energy they can muster.
Sometimes people look at us like we are lazy because we don't involve ourselves in many activities. When the truth is, our involvement might trigger a flare up which will then involve weeks of fatigue and illness.
We don't want to say no, but we need to.
I am aware that the guilt and shame is often unfounded. It's OK for the kids to play outside without me. It's OK to say no to events and get-togethers. It's OK to need help.
We can't be all things to all people. Only God can do that.
I'm handing my guilt and shame over and asking Him to hold me up as I strive to do the best I can.
My best won't look like yours and your best won't look like mine, but we can each do what we can.
Have you ever felt guilt and shame over the state of your own health?
P.S. The thyroid sessions are ending this week. There is a ton of great information being shared. Check it out here.
You nailed it on chronic illness. I have three friends that have similar chronic illnesses. We get together, share, share our health, laugh, crochet, talk Bible and enjoy ourselves. We can’t be ourselves anywhere else. If you aren’t walking through this, you don’t understand. Doctors are bad, unless they have a chronic illness, they don’t have a clue. Spouses help and try to be positive, but they tune out the times we could use their encouragement. My son grew up with me ill and he doesn’t understand that I am getting worse. He thinks I will always be around. People look at me and think I’m okay. I don’t tell people what I go through. When I hurt myself, I usually don’t tell anyone; I can’t stand the fuss. Thank you for your article.
That’s so great! What a positive thing to have stound you. I really wished I had something like that with at least one friend 🙂
It’s wonderful that you have friends you can get together with who understand.
Thank you for sharing a little about your situation. I appreciate it.
Hugs to you!
I completely agree with this article. The feelings, guilt and people not understanding
is so hard some days. Sunday I had an episode and people in the eatery thought I was drinking. It is safer to stay home out of prying eyes but we need to be out sometimes also.
Oh, Esther! That is so hard. You’re right, we do need to be out sometimes. That can be really difficult.
Hope today is a good day.
I agree with the way some meds will make me look like I have been drinking. I stumble and slur words when I get tired. It is sad but it is our life.
Thank you letting me know I am not the only one that this happens to,
I even lost my hair and most of my teeth. I see myself as a shut in.
I’m so sorry you are going through that. That is a lot to deal with. Hugs.
This article nails. I suffer from a rare chronic illness that hardly anyone has which makes me more alone. I look healthy other than my weight gain from my meds so sometimes people don’t realize I struggle to do the simplest things like beginning up and down all day cleaning. It is good to know and read about others in similar situation.
I was actually getting a little down in the dumps over everything that I am going through and decided to start a blog to share my photography of the beautiful things in my world. That was the best thing I’ve done. It has lifted my spirits. 🙂
Thank you for your comment! I love that you started a blog to share your photography and that you are taking the time to notice beautiful things in your world. That was such a great idea! I’m glad it has helped you.
Thank you for your vunerability, Stacy. I have been blessed lately by the work of Dr. Brene Brown. She is a social worker who has researched shame, fear and vunerability. She has written several books which are available in our public library. “If Equip” recommends “Daring Greatly.” Blessings to you!
Thanks for reminding me about Dr. Brene Brown. I have “Daring Greatly” on hold at the library! Must go pick it up.
This article made me cry. My mom has suffered with rheumatoid arthritis for 38 years. This must be the same thoughts she had as we were growing up.
I have much admiration for all of you that have to deal with such harsh, constant pain and yet manage to do so very much to care for and love your families!!
Thank you for your sweet comment, Shari.
You are a great encouragement.
THANK YOU, the guilt of chronic illness and how we feel about this is real. I have Fibromyalgia and man some days or even moments during the days.
Hugs to you, Tiffany! I appreciate you chiming in.
I hope you have some really good days this week.
I’m fortunate that I don’t suffer with guilt and shame, but living with Fibromyalgia and daily migraines is so awful. I so badly want to be my old self again and be able to engage with life the way I used to be able to. I miss it terribly. I do manage to find silver linings to my situation whenever possible and am aware that the past is nothing more than a memory, not to be returned to.
What is the hardest for me to handle is the sadness I see in my family’s eyes when I’m having a less than lovely day.
Thank you so much for this post.
Thank you for sharing, Cindra.
Fibromyalgia and daily migraines is a difficult combination. I’m sure it gets really tough some times. I’m glad you are looking for the silver lining whenever possible. That does help.
I have lived with MS for about 20 yrs. Am so blessed that it is in remission but struggle with osteoporosis terribly…have broken both hips within one week then after hip surgery fell and broke my leg in 4 places. God has been gracious and I am still up moving around. When you mentioned the shame it all came rushing back. For years I lied constantly about broken commitments..I had the desire to participate but absolutely no energy. Now I have surrounded myself with friends that love me and understand…and enjoy my company at what ever the cost. My resposiblity is to be positive and grateful for their faithfulness and love.
Diana Lynn Parsons
I just started reading this site. So many suffer from Chronic Illnesses and let the shame they feel shape their lives. I was diagnosed with Lupus as a teenager, they gave me only a 5 year life span–it made me angry! I said then and there that I would live to be at least 80 years old. That is only 20 years away now and I do think I will make it.
Over the past 42 years I have gone up and down with the illness and now have added illnesses that have join in (found out this is common with Lupus). I too have a non-functioning thyroid, since my 30’s, I have had Migraines most of that time also. 5 years ago I was diagnosed with Fibromyalgia. Due to the medication I take for the Lupus I now have Osteoporosis and Osteoarthritis, and bursitis in both knees. There are other problems also, but I consider them very minor. I use to try to do everything asked of me, at home and at church, but learned my lesson on that when it came to a point that I couldn’t hardly walk. So yes, guilt and shame is there, but I have learned to say no. Maybe if I had of said no sooner, I would not now have added illnesses on top of the Lupus, I really don’t know! I will pray for you all, feel free to contact me if you want. I will answer any e-mails I receive. The main thing I have learned through all of this is that God has my back and I just need to let him handle it all!!
Thank you so much, Diana! I appreciate your prayers! I will pray for you too.
I just love that you have learned that God has your back and that you need to let him handle it all! Such a great reminder to me.
You put into words exactly what I’ve felt for so long. I just finished watching my kids play outside,when what I wanted most was to be outside playing with them. I needed to read every bit of this today. Thank you for encouraging me!
You’re welcome. Thank you for sharing, Jenny! You encouraged me in doing so.
Thank you for sharing this.I struggle with Crohns disease and Fibromyalgia and the guilt,shame and frustration with myself has been a big issue lately. I believe this article to be encouragement from unspoken prayers.
I’m so glad this post encouraged you. I felt nervous to publish it and it blesses me to know that it resonated with you.
Praying you have a good day and find an easing of that guilt and frustration.
Hi All, while we may suffer with chronic illness we need to remember one thing!…. We are still there in our families lives and it’s what we can do with them that they remember. My kids are learning to have empathy for people with illness and they know that I do my best. It’s not as if we are living life going down to the pub choosing not to be present….. Remember John 9……Even though we suffer God will use us to show his ever present power and Glory. We can and will be sustained by the power of God. Blessings to all.
Thanks for your comment, Cindy! It is good to remember that we are still here in our family’s life and that this experience is teaching them something. I am grateful for that.
So glad I came across your story…guilt is no fun on top of everything else we go through. I sometimes wonder how my family manages to live with me being sick so much of the time, then it turns around and I wonder why they don’t seem to understand. I really feel guilty about not being able to work and help out financially, or not being able to keep friends because I never feel well enough to make a commitment to do anything. One day at a time, and I praise God for that day. Hope you all get a few moments of feeling good inside and out.
Hugs, Mae! I can relate to everything you are saying. It’s funny how we can feel guilty and bewildered all at the same time!
Hoping for a good day for you.
I’m 41 and I’ve had Chronic Fatigue Syndrome for 20yrs, since I got glandular fever (mono) at 16. I look well, all the time, which is probably the hardest part.
I didn’t even realize that I feel this way so much of the time, it’s just the way it’s always been for me.
My kids try to understand, and although I feel they miss out on a lot, I know my husband’s attention and attitude goes a long way towards making up for that.
I’ve been married for 15yrs now to my best friend, the most wonderful man, who works hard all day to provide for us and comes home most nights to cook and clean up because I couldn’t.
I do feel a lot of guilt about that, especially when he encourages me to spend my good times painting (who wouldn’t?).
The only way I can deal with it is to keep the communication flowing and express my appreciation in lots of little ways – a note folded into a pair of his socks, unexpected hugs, making a nice cuppa when I can.
I feel incredibly lucky to have someone so supportive, because there’s very few people who really do understand.
Oops, I just realized my maths was wrong. It’s been 25 years.
I think I need a hug!
What a lovely husband you have, Jane! It’s so nice that he encourages you to paint when you are having a good day. What a blessing!
I think you really nailed it on the head when you talked about communication. That is key. I love that you fold a note into socks! So thoughtful. And I sure that is as good for you as it is for him.
Thanks for sharing!
I didn’t realize until I read this article that I was overcome with guilt and shame. I have Crohn’s disease and ulcerative colitis and I’ve been trying to figure out for years what was wrong with me, not the physical aspect of the disease, but the emotional bondage that it has over me. When I read your article I just started crying because it touched a place I didn’t know existed. Thank you so much for having the courage to post this so that people like me can try to move forward. Because lird knows i will try from here on ou.t
Thank you for commenting and sharing a little about your journey. This post was scary for me to publish, so I am beyond grateful that it helped you a little.
It’s physically tough living with those diseases, but also so hard emotionally. Hugs to you!
Keep on trying. You are strong!
I’m COMPLETELY alone in this. My daughter’s and siblings don’t speak to me because they think I’m making it all up. I have Lupus, RA, Ankalosing Spondylitis, Fibro and Hemolitic Anemia. I’m on infusion chemotherapy once a month and oral chemo meds everyday. I, gratefully have a great doctor because his mom had RA all his life. My husband is on the fence and my son says he hates me for being married to someone who would treat me like that. NOBODY will go to my Rheumatologist appointments with me, or to chemo, I’m in and out of the hospital at least 8 times a year for 8-10 day stays. My belief in God and my son keep me alive. ..
I’m so sorry you are alone in this, Liz. That must be very difficult.
I’m thankful you have God and your son. I’m praying for you this morning.
The paralyzing guilt keeps me from completing day-to-day tasks and then they pile up making them more overwhelming. I fight with myself and the voices that have called me lazy or a poor housekeeper. It keeps me caught in a vicious cycle and I’m struggling to break it. I need new tools to address my new vulnerabilities.
I understand. Have struggled for years with onging
health problems. Your doing the best you can and
trusting in God, we both are. You’re amazing just
doing this website. Thank you!