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Books on dealing with chronic illness?

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DD20 has a debilitating chronic illness. She can't work or go to school.  She is struggling right now and is thinking about finding a therapist to talk to who may specialize in chronic illnesses. In the meanwhile, she is open to reading books on the subject to see if that helps.  Any suggestions?

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No suggestions but I'm sorry about your dd's illness and it's effects on her.  I hope she finds something to help.  

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What does she want to hear? For me the whole “life was awful and I overcame it all to go run a marathon” stories make me angry. Even the zen “find purpose in your suffering” leave me cynical. The only books I find comforting are the ones where people are just honest about the challenges. Kinda like sitting next to someone who just lets you say, “This is hard.” Don’t try to comfort or fix me—just be with me and see me as a person, iykwim.

But, that’s just me. Other people find comfort in other things. What is she hoping to find?

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6 minutes ago, prairiewindmomma said:

What does she want to hear? For me the whole “life was awful and I overcame it all to go run a marathon” stories make me angry. Even the zen “find purpose in your suffering” leave me cynical. The only books I find comforting are the ones where people are just honest about the challenges. Kinda like sitting next to someone who just lets you say, “This is hard.” Don’t try to comfort or fix me—just be with me and see me as a person, iykwim.

But, that’s just me. Other people find comfort in other things. What is she hoping to find?

I think like you, more practical advice. "This sucks! Some find relief from ABC or XYZ. But sometimes you just need to cry and say it isn't fair...and that is ok too!"

She has had chronic illness for so many years, most of the basic ideas are not helpful. 

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It's Not Fair: Learning to Love the Life you Didn't Chose by Melanie Dale was extremely helpful for me when I was going through the arrest of my husband, divorce, etc.  It is a book about grieving, dealing with life that isn't fair, and moving on.  It is NOT a everything is hunky dory type book.  It is Christian but not a "just quote this verse" and all will be well type book.  It was very real and honest.

I found it very helpful.  I have purchased several other copies and given them to friends going through rough times as well.  It might be helpful for your daughter as well.

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Are there web forums specific to her illness(es)? If so that might give more help than something about chronic illness in general.  

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2 hours ago, Pen said:

Are there web forums specific to her illness(es)? If so that might give more help than something about chronic illness in general.  

One problem she (and I) have with forums related to her illness, is that she is in the middle ground for symptoms, but occasionally dips into the debilitating end. Reading the related forums, is a huge reminder of the bad days and how easy it is for her to go from upright to bedridden. She isn't into reading about her illness or research, so the medical based ones aren't of interest for her. She met someone radomly a few years ago with her illness and dd didn't have much interest in getting to know her. The other girl struggles more than dd with physical symptoms, but has been able to continue to go to college. I  think the combination was really hard for dd to deal with.  DD really struggles with brain fog and can't go to college any more. It is one of the hardest things for her  to give up. 

I think she needs something more general about chronic illness instead of something she can realate to so personally.

FYI: just for some basic info...she  has POTS and can only be upright for part of the day. This is great, because in her bad times, she was almost completely bedridden. 

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Some important research into POTS was published 6 days ago.  Which has identified POTS as an 'Auto-immune Disorder', which specifically effects the " adrenergic alpha 1 receptor ".   Here's a link to the article:
https://www.sciencedaily.com/releases/2019/09/190909081756.htm

This opens up a new line of treatment, in line with treating other Auto-Immune Disorders.
Perhaps she could read books which look at the broader issue of Autoimmune Disorders?

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Not Comparing herself to others is probably something to work on !  

 

Is she doing autoimmune diets etc?

 

 

 

If she has a hard time with doing things and brain fog, books related to chronic fatigue and myalgic encephalitis would likely be relevant. Perhaps without making her as unhappy as POTS materials. 

For example, the best I know is: Diagnosis and Treatment of Chronic Fatigue Syndrome - second edition https://www.amazon.com/dp/1781610797/ref=cm_sw_r_cp_api_i_.4JFDbK8095HF

Books about living with Lyme disease would be dealing with similar constellations of symptoms 

 

books related to coping after TBI might also have some useful strategies 

 

She might also find this book at library if she can, and look at it and others shelved near it to see if any might help her:

How to Live Well with Chronic Pain and Illness: A Mindful Guide https://www.amazon.com/dp/B0112OOP0S/ref=cm_sw_r_cp_api_i_UaKFDb30AQBG4

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Would novels with characters dealing with a chronic illness be helpful? My dd has taken both solace and hope from some of these. We'd both recommend Please Read This Leaflet Carefully, about a woman dealing with endometriosis and environmental allergies.

So Lucky is another great one. The protagonist has MS. She's also a lesbian, FYI.

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