How to Cope When Your Child Is Diagnosed with a Chronic Illness

Updated on September 12, 2011
K.B. asks from Parker, CO
11 answers

Sorry for the heavy subject matter, but I thought someone out there could relate. One of my children has just been diagnosed with a chronic, progressive illness. This diagnosis has been a long time coming, so I've had time to digest it my way. I will do my best to make peace with the "official" diagnosis and continue to support my child. My problem is that my husband doesn't deal with all of this the way that I do. I realize that no two people cope with stress the same way, so I don't fault or blame him for dealing in his own way. My problem is that I don't know how we will get through this together if we can't talk about it at all. When I try to talk to him about my feelings, I realize it's not even worth it. His method of coping is denial. Complete and total denial. "His doctor is wrong "(and we've talked to more than one), "you'll see, he'll shake this with no long-term effects," "you're a complete pessimist, and that's why you get along with the doctor so well because so is she." Anyone out there been through this? I'm not sure what to do. I don't think I'm pessimistic, I'm just being realistic. He doesn't want to face it.

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answers from Colorado Springs on

I see you are in Colorado, and a GREAT organization for you to contact is Family Voices of Colorado or ###-###-####. They can attend medical or school meeting with you, and will have some great tips and support for you. I hope this helps!

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answers from Dallas on

That would be really tough. My oldest was born with a fatal disease. I can relate to a lot of what you're saying. People deal with grief differently. It was hard at first with my hubby and I. I felt lonely about it because he dealt with it very inwardly. If stressful things happened, he would pull in to himself, while I was needing to face this WITH him. I needed that comfort and communication from him.

But he was never in denial about it like you are dealing with. That is part of the grief cycle. Many people start off in denial. Then they'll move to the next stage. They might feel angry or accepting or emotional, etc.

I think I would suggest giving him some time. The grief cycle really is that - a cycle that repeats itself. Over a period of time, it goes through the cycle of different emotions and dealing with it, then it restarts. I've never had denial like your hubby. But I have had times where I don't focus so much on the reality of it. Then it'll suddenly hit me, and the grief is really strong. I think if there is truly enough evidence that your son has this illness, your husband will eventually come around to it.

If you need to go to counseling to figure out how to deal with him, definitely do. I'm guessing he won't go with you? My hubby and I haven't gone to counseling, but it's something I think would be very helpful for people in shoes like yours and mine. We would have gone by now, but our daughter's illness makes it difficult to have others be around here (she's immune compromised).

So many people get divorced over things like this, and I think it's because there can be such a difference in dealing with emotions over it. And, while one might be feeling withdrawn about it, the other NEEDS a connection with the other one. My hubby and I have talked about it and how we each feel. I've told him I need him to hold my hand at scary times and stay close to me. He's very calming to me. But I want to do that for him too. Not just about me.

Sorry, it's really late here. I think I've totally rambled. While he's in denial, I'm not sure what you can do other than wait it out. Or maybe have a doctor talk to him and explain the facts. Once he switches to a different part of the grief cycle, then I think you'll be able to discuss things more and share how each of you feel and things that you need from one another while you each deal with it. Because even though it's normal for people to deal with grief have to still take care of each other through it. And it sounds like you're feeling pretty alone with it!


5 moms found this helpful


answers from Redding on

Print out info about the condition so that both you and husband are educated about the ups and downs of the illness. Quietly educating your husband on what to do and expect might be the best route to take.
Join a support group. Chances are their are other parents going through the same thing and you will feel better if you have someone to talk to about it when your husband doesnt want to.

4 moms found this helpful


answers from Lynchburg on

Hi K.-

As the mom of a chronically/critically ill child...All I can suggest is that you and husband get to counseling. A good therapist for you both...and perhaps a support group for you...may help to ease you both through this.

The divorce rate SOARS when there is a death of a child...but I am willing to bet they are even greater for families with a chronically/critically ill child. This is because of the 'roller coaster' nature of this particular journey...and the different manner in which each parent deals with the very 'high' highs...and the sometimes very 'low' lows...

I send you HUGE cyber hugs...

Please private me if you daughter has congenital heart defects...and chronic lung issues.

I am divorced.


4 moms found this helpful


answers from Los Angeles on

I am sorry for what you are facing and will keep you all in prayer.

Get into a support group now. You need to be able to talk to other parents, whether in a group or online to express your feelings and concerns and see that others have been there or are there.

By your example your husband may come around, or he may never. But you can't worry about him, your son needs you and you need to take care of him and you.

God's blessings.

4 moms found this helpful


answers from Kansas City on

Sweetheart, I am going to say that your husband may not be handling this right and his faith may or may not be misplaced. But you can turn to God, read his word, watch programs about biblical healing and you DON'T have to accept this for your child. I realize that not everyone that turns to biblical healing is healed. But GOD DOES NOT cause or directly allow sickness at all. We are given all the tools we need. It takes faith and diligence, sprinkled with a whole lot of learning and changing to be able to accept that Christ died on the cross for our salvation AND for our healing. By his stripes we are heeled.

I would like to suggest that you go to Andrew Wommack's website and watch the first 3 weeks of his show this year. It was all about heeling testimonies that have been verified with plenty of tests before and after healing. You can google Andrew Wommack.

3 moms found this helpful


answers from Houston on

I am sorry your family is going through a hard time. I would say just talk to someone else for the time being. How is your relationship with your mom? Maybe you can talk things out with her. I realize this will constantly come up as you need to pursue help for your child, I wish I had some advice for that. I think all I can say is take it one day at a time and even if you need to get a good counselor, do it. I think as a woman and a mother you need to process. He may come around in time and in his own way but he obviously just can't deal. I wish you the best, hang in there.

3 moms found this helpful


answers from Chicago on

I'm so, so sorry to hear about your child's diagnosis. I will say a prayer for him or her.

Please understand that everyone copes differently with grief. For some it's hanging on to that positive hope as long as possible. Hope keeps us alive. Don't take the hope away from your husband if that's all he has to cling to.

For you, accepting it is how you cope.

I would suggest seeing a counselor, perhaps someone from your church? The two of you could go together.

And I don't know what your child has, but look up Miracle Mineral Solution and download Jim Humble's book. It's worth a look.

2 moms found this helpful


answers from Oklahoma City on

I don't have any good advise for you but just wanted to say that my husband is the same way! It is so frustrating because when I worry about something and I talk to him about it he just says "it'll be fine". He never lets himself believe something could REALLY be wrong and thinks that I need to just see things more positively. He has gotten a little better but it's so hard when YOU KNOW that there IS something wrong and you need the support of your spouse but they are not willing to even accept that there's a problem! Arg!
I'm sorry I can't help you but I just thought I'd let you know that maybe it's kind of common between couples with chronicly sick kiddos



answers from Denver on

Well I don't know what the diagnosis is but my kiddo ha a chronic illness/disability. My husband was very much like yours. He didn't really think anythin was wrong for a long time and it was very hard to get him on board with treatments and such at first. He was also trying to "catch" my so "faking" all the time and it was awful. Because he wa being to harsh I was being too soft, it causes a lot of tension for awhile. I would defiantly suggest having the doctor go over the diagnosis with your husband, so he hear it from someone other than you. I also printed articles and stuff and would leave them in our bathroom where I knew my husband would stumble upon them and read them. In time he has come around but there were some trying month along the way. PM me if I can be of any help. Hugs.



answers from Washington DC on

Please find the groups that help families in your situation. For your child's illness there is surely a "National (name of condition) Association" or "American (name of condition) Society" that provides information, supports research and yes, supports families too. Search the group's web site for patient and family support groups and find some in your area. Your husband may cope better with his feelings, and then with yours, if he can talk to other dads who have children with this condition and they share their feelings with him. Another route if needed may be counseling for you and your husband -- this could be a big strain on your marriage, if you feel unsupported while dealing with this, or he feels overwhelmed but shuts down. Seriously consider making either individual or couples counseling part of your family plan for dealing with it. That sounds like a tough thing to fit into what surely will be a difficult schedule due to doctor appointments for your child etc. But your whole family is involved here and your child needs for you and your husband to be on the same page and supportive of each other.

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