Chronic Illness and Family

Have you helped them to UNDERSTAND the conditions you are facing? I would send them dvd's if avail explaining the conditions and invite them to a doctor's appointment to discuss the issues and how they can help. My father did not understand that my sister at 33 was diagnosed with Parkinson's and dismissed her diagnossis until he went to an appointment with her - now, he gets it.

Health problems and chronic illness are difficult enough without having to deal with family politics. It sounds like your family has found a way to make things work and are happy!! Your husband is probably blue in the face from explaining things to his family. In the future, it might be best not to accept any invitations or say you're "tentative" and won't know if you can attend until as late a couple of hours before the event or even just before the event. If someone really needs a yes/no, then explain that the answer is "no" because you would hate to cancel at the last minute. You don't need this stress! Best wishes to you.

My dd has 4 diagnoses for serious medical issues, but none of them are apparent to the casual observer, so she, like you and your daughter, is in that "invisible" illness category. They are debilitating illnesses, and they are real, but they're not something you can see, like paralysis, or cerebral palsy, or a physical deformity, etc.

First off, go to www.butyoudon'tlooksick.com and read The Spoon Theory (up at the top. It is very enlightening and perhaps your husband could share it with his parents.

But most importantly, I would urge you to re-think your original question. Some people are never going to accept the facts, no matter how solid those facts are. One time my dd was having a particularly bad day, and a neighbor kid came to the door asking if she could play video games with him. My dd was lying on the couch. The neighbor kid looked at her and said "look, she's right there. She's not in the hospital. You're lying." He then proceeded to tell his mother and several other neighbors that I would not let my dd play with him because he is of a different race, and that I was lying about my dd being sick just so she didn't have to interact with him (of course he put it in much cruder terms). His mother instantly assumed her son was right and was so angry at us. She accused us of all kinds of things.

So I would encourage you to focus instead on helping your daughter (and yourself) learn how to deal with a world that may not understand illnesses and conditions that aren't physically apparent. Teach her to advocate for herself, in appropriate words. "I have a condition called Cystic Fibrosis that makes it hard for me to breathe" or something like that. Teach her that some people will disagree, or even worse, that they will accuse her of lying or making excuses, but tell her you support her and believe her and will always do so. And her doctors believe her. And all the other CF patients in the world believe her.

As for your in-laws, I would say something like "I'm sorry that you don't support your granddaughter in her fight against such a serious disease as Cystic Fibrosis, and that you don't understand what it's like to live with a chronic illness. Please read this [and give them a printout of the spoon theory]. We look forward to spending time with you when we are able to, but if you cannot understand and empathize with our physical limitations, we will be unable to join you for some family get-togethers. We hope you will become educated about Cystic Fibrosis [and give them a simple pamphlet or printed explanation] and defend your granddaughter in her fight to live a happy life." (I'm focusing on your daughter here, not to underestimate your own conditions, but often grandparents have softer hearts toward their grandchildren).

It is possible that they don't understand MS, Crohn's and Cystic Fibrosis, and that they are from an age where if it's not cancer or a war injury, or something in simple words like "a broken back", they just assume you have something that's like a cold or a bad pimple. Ask your doctor or search the web for how to explain your 3 conditions to a non-medical person. Make sure they comprehend how serious your health risks are, and how smoke or germs can make things worse.

I'm sorry you have to deal with this. My own brother has said I have "created" my dd's diagnoses in order to "get out of things" and "get attention". It is very hurtful. But we do all we can to verbalize to our dd that we believe her when she says she's in pain, and to re-iterate that her doctors are well-educated and that they support her and understand her illnesses. She is learning to trust them, and not the stupid neighbor kid.

I'm sorry you have so much to deal with and little support from your inlaws. I think the major problem is that for the most part chronic conditions are thought of differently than acute illnesses. Most people only have contact with acute conditions so they are use to a process of you get sick, you recover, and life goes back to normal.

Chronic is confusing to them because you look fine but exposure to someone sick or smoking can make you deathly ill in a matter of minutes. Their brains aren't wired to see ahead where that's the thing you are so use to doing. You look at situations in a defensive way that that's what you need to do.

When you have to back out of something and your inlaws start making comments just have a pat answer "We'd love to attend but it's just not possible." Lather, rinse, repeat as often as needed. Don't give explainations or try to get them to see it your way. It's not a debate; it's you daughter's life and your quality of life at stake.

Shame on them! I see you work FT too. You have a lot on your plate! At least your husband is on your side. You've probably already done this, but have you tried forwarding them or printing out some Web MD.com type articles about these conditions? Maybe it would help get it through to their heads....

You are doing an awesome job of managing several serious diseases with a positive attitude. They should be singing your praises and helping in anyway they can.

What their response tells me is they are just too self centered to understand anyone else. Really, you are ill and they make it all about themselves?

All you can do is take care of your family and do what you can and want to do. Just give them a very short explanation, such as "we can't make it." Do not let them pull you into their drama by giving them reasons and trying to get them to understand. You see if they did have compassion, it would not be all about them.

Perhaps you can have your MIL take you and dd to next appointment. Warn the doc ahead of time that you'd like him to go over the list again of situations she should avoid. That way MIL is hearing it from the horses mouth. She may realize that some things they are doing are hurting your child. Her "Mom" instinct may kick in and then you'll see a difference.

Or perhaps you can have her take you to a support group meeting, these are often full of parents talking about the struggles the family is having with just these things.

Education is obviously what they are disregarding.

Oh gosh, I am SO sorry! My kids have a chronic disease and our family members are so considerate, helpful and compassionate.
Our friends are also very understanding about it, but there are a few people who say nasty things and my response is, "Please try to educate yourself on the disease and realize what we go through on a daily basis before you accuse or make assumptions". It may sound harsh, but education is the only way to get through to some people.

I know enough about MS, Chron's and CF to know that sometimes you are probably just EXHAUSTED from life that you need to stay home. HUGS! I hope your inlaws get a clue.