The rare CI benefit: helping others with a recent diagnosis

November 13, 2012

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 Comments | Educating, Expectations, Frustration, Healthcare, Isolation, Kindness, Raves, Support | Permalink
Posted by chronicrants

How helping out helps me

October 17, 2012

Doing too much is a bad idea and brings on more fatigue, but doing too little is also a bad idea and brings on more lethargy.  It’s hard to strike a balance.  I’ve also noticed that I feel better on the days that I interact with people I like for at least an hour or two (but preferably longer.)  A trip to CVS where I chat with the pharmacist for a few minutes usually doesn’t help much, but lunch with a friend can brighten my whole day.  Staying at home makes me feel lousier than usual.  (Yes, I am going to use “lousier” as a word.  Do you have a problem with that?)

In an effort to get out of the house more, I’ve done some unofficial volunteering lately.  A friend works for a nonprofit whose mission I believe in.  I know many of the staff there and I love hanging out with them.  A few times now I’ve gone to their office in the late morning (since early-mid mornings are tough for me), worked for an hour or so, enjoyed a nice lunch with some of the staff, worked a couple more hours, then headed home.  And of course, some of that “work” time involved chatting with friends there, too.  I always feel good (tired, but still good) on those days, but today was even better than usual.

Interacting with people is one of the reasons why I feel good on the days I help out.  Another reason is that I feel useful.  One thing about not working and not being able to do much else is that I don’t feel like I’m doing anything to help other people most days.  This is hard for me.  I have always worked in nonprofits because I enjoy doing something productive to help other people.  In my spare time, I used to help out some more.  Now, spending my days researching treatments for myself, doing my exercises, and measuring medications might be helping me physically, but it’s really not helping me emotionally.  There’s also the mental issue – when I sit at home, I don’t get to use my brain too much.  Sure, I read, but that doesn’t usually involve stretching my intellect.  The volunteer work isn’t usually the most challenging work I’ve ever done, but at least it’s different from what I’m doing every other day, and that’s enough to help.

So what made today so much better?  Well, in addition to helping out with several office tasks, I also helped my friend create a new budget.  For many reasons, his financial situation is changing for the better, but he also needs to be saving for some new, previously unexpected areas of his life (wedding, house, etc.) so we worked on the numbers.  I love numbers.  Math is great because 2 + 2 = 4 EVERY FUCKING TIME!!!  How great is that!?!  I can always count on getting the same answer.  I wish my health (or anything else in life) was that consistent!  Anyway, that’s beside the point.  The point is, I love this stuff, so I was able to use my skills and knowledge to help someone directly.  We spent a while working on this.  We looked at his paychecks, his retirement plan options, his obligations, and considered it from all angles.  I created a spreadsheet with formulas that will automatically update when he changes anything (yes, I’m a spreadsheet geek and proud of it!)  I added a chart that automatically changes, so he can visually see his savings increase over time.  We came up with a plan for him to save significant amounts towards retirement and reviewed the tax implications of the different types of plans.  By the end, he had a useful, beautiful spreadsheet and a greater understanding of his present and of his future.

In return, I felt, for the first time in a while, a great sense of accomplishment.  I did something today.  This won’t help my long term plans or settle my nerves about the future, but today, right now, it makes me feel really good.  Life has been difficult and stressful, but today it felt a little bit easier.  Helping someone else really helped me.  It was a distraction, but also a reminder that I’m not useless (despite what society and government says), that I can do something to benefit others.  I can’t do it every day, but I’ll definitely do it as much as I can from now on.

5 Comments | Educating, Expectations, Isolation, Raves | Permalink
Posted by chronicrants

Thinking and talking about death

October 16, 2012

Wego Health is having a Tough Stuff Month, and they were kind enough to let me write a guest post.  If you’re curious about my musings on death, please visit my post on their site.  And if you’re not familiar with Wego Health already, please check them out.  They do really great work.  Also, as part of Tough Stuff Month, they’re having a Catharsis Carnival where you can write anonymously about a topic that is usually not talked about.  This is a great opportunity to share your thoughts or to just get something off your chest.

2 Comments | Educating, Isolation, Raves | Permalink
Posted by chronicrants

The chronic illness-depression connection

September 28, 2012

A friend of mine does suicide prevention work.  And she needs your help.

From time to time I pass along information to my friend that I think might be useful.  Sometimes it’s a blog post, or a tweetchat, or just an idea.  Other friends do it too, to give her ideas for new angles.  Recently I sent her a blog post from someone else’s blog that I thought might be helpful and she wrote back and asked if I’d give my personal perspective on living with a chronic illness.  I’ve always been completely open about my health stuff when someone asks, but I don’t talk about it too much otherwise.  I’m not trying to hide anything, I just want to focus on things other than my health sometimes.  So when we met up this week, I found that first I had to explain what it really means to have a chronic illness.

We met up in person to talk about chronic illness and its intersection with depression.  This is an area that gets talked about a lot in chronic illness circles, but I don’t hear much about it in mainstream mental health care.  As it turns out, they do talk about it in her office, but she didn’t feel they’d examined it thoroughly.  So we talked for over an hour and we covered a lot of areas.  We talked about the depression that is a part of the illness, the depression that’s a side effect of medications, and the depression that comes from the pain, isolation, frustration, etc.

I talked about being told the symptoms are all in our heads, about the self doubt, and about not having a diagnosis for years or decades.  I talked about the strain it puts on relationships and the difficulty dating.  I talked about the lack of control over my present and the lack of control over my future.  I talked about rare conditions taking longer to get a diagnosis, but then not having support groups available after diagnosis because of the condition’s rarity.  We talked about chronic illness causing PTSD.  We discussed autoimmune-type diseases versus more well-known chronic illnesses such as heart disease or diabetes.  We talked about society’s judgment on us: society saying that we caused our illness or that we’re worthless because we can’t work at a job, etc.  We talked about stigma from government and from individuals.  I talked about our own feelings of worthlessness.  I talked about wanting to contribute to society in some way.  We discussed how hard it can be to connect with family and friends when we can’t do “normal” activities.  We talked about how hard it is to “keep a positive attitude” when the truth, the reality, is that things will not get better, and they will most likely get worse.  And of course we talked about the 5 stages of grief.

She was blown away by all of this.  When I talked about being in pain all the time until a few years ago, it became clear that she hadn’t realized that it was literally all the time.  When I talked about the relief of having a few minutes at a time without pain, she was shocked.  This is a woman who has always tried to understand, but she simply didn’t because no one had ever really explained it to her.  Now she’s learned a bit more.  And of course, she wants to help.  She can not help with the physical symptoms, but she can create practitioner trainings and outreach programs and also write on her blog in order to help our mental health.  And in return, we can help her.

So here’s where you can help.  I am only one person.  I told my friend about my own experiences and about those of some others in the community, but of course I can’t talk about everyone, nor should I.  Instead, I encourage you to talk about how your chronic illness affects your mental health and vice versa.  Write a line or 2 or 20.  Comment here, email me (msrants at gmail dot com) or write to me on Twitter (@CIRants) and I’ll be sure she sees it.  This is a good chance to assist someone who wants to help our community, so let’s give it our all!

Part of the email from my friend:

In my work, we do talk about chronic pain and illness in relation to suicide, but we haven’t done a thorough job of examining the issue, I believe because we’re not sure the best approach to take…. I’d love to talk with you about ideas/approaches for addressing this issue and possible interventions/programs. Or, if you know of folks you think would be good to talk with – people living with chronic conditions, health care providers, etc. who I should talk with, please let me know.

7 Comments | Educating, Healthcare, Isolation, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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