The rare CI benefit: helping others with a recent diagnosis

There aren’t many benefits to dealing with chronic illness.  I can only think of two.  The first is the one we all hear about constantly: a greater appreciation for what we do have, a better view on life, etc. etc. etc.  Sure, that’s all true, but hearing it gets tiresome, because it’s usually said with the implication that it makes all of the CI crap worthwhile.  I disagree.  I’d gladly give up my great insights if it meant greater health.  That’s a big reason why I started this blog.  But I digress.

The other benefit is being able to help others who are dealing with new diagnoses, which is what I did yesterday.

The first time I really experienced this was several years ago when my mother had a bad fall that resulted in multiple broken bones and kept her mostly off her feet for several months.  She became very grumpy, and my father had trouble transitioning to the role of caretaker.  I sat my mother down and explained that she needed an attitude change, like actually saying “thank you” occasionally, and not taking her frustration out on others.  Several times she started to say “But you don’t know what it’s like to be in so much pain….”  Then she’d remember who she was talking to.  She couldn’t use excuses with me, and so it forced her to confront her problems head-on and to address them.  I was also able to use my experience to help my father be a better caretaker.  After our talks, they did much better.

This week is less emotional at the moment and more practical, but I can see that the emotional parts will come soon.  A friend just got the official diagnosis that her son has autism.  She has been waiting for these evaluation results for a long time, and throughout the wait she spoke as if she already knew the results would be positive.  Of course, there’s a big difference between knowing and knowing, and she’s having a tough time now that it’s official.  We spent an hour and a half on the phone yesterday.  She griped about how poor the system is, knowing that I understood.  She vented about how frustrated she is trying to get answers, knowing I’d understand.  She didn’t talk about her feelings regarding the diagnosis, but I know she’s still processing that.

After a lot of complaining about our broken healthcare systems, my friend mentioned how impossible it is to understand health insurance plans.  That’s when she first told me that she’s in her open enrollment period, meaning that for a short time she can change her plan if she wants to, and she’s lucky enough to have two options through her job.  Unfortunately, it’s possible that neither option will cover her son’s needs.  Boy am I glad she brought this up!  I told her that I was around to help any time she wanted, but she just sounded so overwhelmed that I threw out a few off-handed comments about various health insurance provisions and, sure enough, one caught her attention as something she’d read but not understood.  For the next half hour we just focused on health insurance.  I explained deductibles, co-insurance, and out-of-pocket maximums.  I explained the way doctors can sometimes get exceptions to the coverage rules.  I covered a few of the things that might change in 2014 as the ACA goes into effect.  I told her what to ask when she calls the insurance companies’ customer service lines, and what kinds of notes to take.  I told her that if they said they would cover something, to insist that they send her that statement in writing.  We didn’t cover everything, but we covered a lot.  And I promised to come to her house next week to read over the paperwork myself, so see if I might pick up on something that she wouldn’t know to look for.

Having chronic illnesses sucks, no doubt about that.  Again, I’d gladly give up all of my insights if it meant better health.  Still, if I’m going to be stuck with this bullshit in my life, I’m glad that I can at least use it to help a dear friend.  She has a tough road ahead of her, and she knows it, but at least by the end of our conversation she sounded a bit less overwhelmed, a bit less terrified, and a bit more in control.  She is a smart, caring person, and a great mom.  I know she’ll do right by her son.  And I’m glad she can focus on that now instead of studying the fine print of health insurance paperwork.

7 Responses to The rare CI benefit: helping others with a recent diagnosis

  1. It’s true that there are ways you can help people. And the intricacies of the US healthcare system take a lot of knowledge. I had a friend who acted as adviser to a whole online group. She was a born researcher and official smart person..

    Being a mentor is rewarding for everyone involved. Of course there can be drawbacks and I saw some actor/patients demonstrate that at a course. It made the whole mentor idea seem intimidating.

    Yo certainly were the right person at the right time for your friend

  2. T.M.K. says:

    If your friend lives in MA her son may be eligible for MassHealth as a secondary insurance. They’ll pick up all the copays and deductibles, and if she is the primary subscriber for her insurance plan, they may reimburse her some of her monthly premium. My nephew gets these services.

    • chronicrants says:

      Thanks so much! I’m passing this on right away. I sure hope she can do this!

      • T.M.K. says:

        She should be able to get it. I know a few people that have it for their autistic children, and all have good paying jobs. My sister was paying over $100 a week in copays for pt, and speech therapy – not including doctors appointments. MassHealth covers it now, as well as his diapers since he turned 3. She also gets back $580 of the $620 she pays for a family plan. The state would rather help out and keep the parent(s) working than support the entire family.

      • chronicrants says:

        This is so fantastic to know – thanks so much!!! I passed this on to my friend and she’s grateful for the info. Thank you!!!!

  3. rachelmeeks says:

    I read this just after sending a lengthy email to a stranger who posted some questions on my blog. It’s always great to help others through the process. I still don’t really understand healthcare, but I’m getting there. Getting stuff in writing is very smart.

    Ahh, the very, very, VERY thin silver lining of the chronic illness cloud.

    • chronicrants says:

      It’s good you were able to help someone else. It’s a difficult, confusing system, and I think we all need to support each other as much as possible just to figure it out on even the most basic level. You’re right – it’s a *very* thin lining to that cloud, but I guess it’s better than nothing.

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