The four stages of relapse

I’ve decided it’s time for an (admittedly tongue in cheek) exploration of my emotional reaction to relapse. Tongue in cheek not only because I’m comparing to a very well known model normally called “The five stages of grief” but also because the evidence suggests that that model is a poor representation of what really happens to people suffering from grief (as described in this news article which explores grief across cultures and a book by psychologist George Bonanno who has studied grief, its heterogeneity, and successful coping with grief extensively). So with those caveats in mind, here’s my version:

First off, I am pretty much always experiencing two things at once. Secondly, my order is different.

Denial + Acceptance

I seem to be a master of Cognitive dissonance at the start: Big voice in my head: These initial symptoms will not be a relapse. They WILL NOT BE  A RELAPSE. I will repeat that as often as necessary. Small voice in my head: I’m probably going to have a relapse, but it will be short and I’ll move on. What I say to others: I’m feeling fine. What I tell my husband: I’m having night sweats (or whatever other symptom) so be warned. Hopefully it’s nothing.

Bargaining + Creating A Solution

I go into research mode. My pattern is the same but the outcome is different each time. I come up with some “solution” that will make things better, research the wazoo out of it, start down that road, and if I’m lucky drop it completely because the relapse ends. For example, last time around I researched disability accommodations, this time around I researched canes and low dose naltrexone. The fact that I got to two things (and executed on them both) is probably a hint that this relapse has been longer/worse than usual. This comes with a fair dose of optimism: whatever I come up with, I’m convinced will help. In the case of my new treatment idea, I was stubbornly applying the placebo effect along with hoping it would work for the first four days I took it. On day 5 I could not ignore the symptoms that were coming back, but I’m still going for the placebo effect — though I’ve never experienced one before I’m going to believe this is a herx!

Anger + Self Doubt

I’m currently in the “I want to throw things (if only I had the strength to)” stage. Actually, I do have the strength to sometimes, but at those times I’m neither angry nor depressed so I don’t want to then. It’s when I wake up from a nap and my arms are too weak to even use my cane easily that I want to throw something. This is about when I also allow myself to start wondering if I’m not going to get better, should investigate other diagnosis, and whether I’m contributing enough at work to be useful there, whether I should just stay home and give my kids what they need, and why no one asked me to review any UIST papers or sit on any proposal committees this year.

This doubting is a bit ridiculous considering I am on a program committee and an NSF panel this spring as a reviewer, submitted 8 papers just this Spring (7 to top tier conferences), am co-advising 6 PhD students, teaching a class, helping with the hiring committee and tenure review, and spending plenty of time with my kids. I needed to say (and read) that so forgive me for the self-indulgence. But doubt I do nonetheless. It’s true that at home long walks are limited to when the dog and I both want them, I have lots of kid time, and I can use my energy as much or as little as I want, sleep when I want, play when I want, work when I want. It is so much easier that way, and perhaps that’s the most legitimate reason I phantasize about “just stopping”. On the other hand, at work I am valued for my mind (especially useful to feel and know that when the brain is sometimes fuzzy or difficult), and I contribute in a totally different way than at home. Work may be hard at times but sitting at home feeling sorry for myself while the kids are at school (worst case) would be far harder.

Recovery + Change

I have to believe it will end with recovery, as it always has in the past. A day will come when I get back on my bike, put my cane away and can just be myself again. Or maybe a day will come when I am comfortable in my new skin. But I’m betting on the first outcome. It may make it harder day to day since I don’t truly accept what’s happening to me, but it gives me hope for the future. Besides I get to experience “recovery” almost daily for a few hours here and there. And I am becoming more comfortable using my cane. I don’t use it at home — that’s a space to be myself, relax. But at work, instead of worrying about the attention it attracts I feel the positive energy and support it brings me.

A Good Remedy: Patience + Faith

So where does this all leave me? It seems like forever, but this all started getting bad only at the beginning of March. So I’m a month and a half in, looking at an international trip in a few weeks, realistically this could last 3 months given that travel. Not terrible compared to other relapses, not great either. What I need instead of all of the other things listed above is one simple item: patience. I need to persevere through this as through all the others and wait it out. And I need to keep the faith that this too will pass.

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6 Comments

  1. decimawho said,

    April 13, 2013 at 7:51 am

    Great post. I veer from boundless optimism (lemon juice will CURE me and sort out ALL of my stomach issues) to “I’m NEVER going to be well ever again, aaaagghhh”. Usually I sit somewhere in between and see my situation more logically.

    Hope your relapse goes away soon and that you’re as good as can be for your trip away!

  2. jmankoff said,

    April 13, 2013 at 6:11 pm

    Thanks! I may cancel if things don’t improve some, but I’m still keeping my fingers crossed. It’s been a long time since I could attend that particular conference.

  3. olena said,

    April 25, 2013 at 7:38 pm

    Thank you, your post is great. I am very much want to ask you some question. I read that you used antibiotics before and do not use them now. On what stage of your treatment did you stop them?
    When did you stop? What was a reason for such action? Do you consider start antibiotics again when you have relapse? I did not understand, did your relapses go away in a while without antibiotics?
    And no antibiotics and you feel better?
    My relapses did not go away without antibiotics or I might did not wait long enough (up to two months).
    Do you consider low dose of maintenance antibiotics ?
    I am looking for my way and I am with antibiotics now, but want to stop.
    I feel good while with antibiotics but relapse each time during one months of stopping. My choice is to use antibiotics or be very sick. I did not think that relapse might go away without antibiotics. I might need to wait longer. Please, share you experience.
    Thank you. Elena

  4. jmankoff said,

    May 3, 2013 at 12:37 pm

    I stopped when I went for more than two months without symptoms. I’ve had periods of 6-10 months without symptoms at times since then. I did consider restarting but my doctor recommended waiting the relapses out as long as they were not too long or severe, and coming to see him if things kept getting worse. They do go away after a while without antibiotics. I have had to wait up to 3 months, but usually with signs of progress while waiting. I have tried other things in relapses like supplements to help.

  5. olena said,

    May 4, 2013 at 10:39 am

    jmankoff, thank you very much for your answer. I did not know about this possibility. How do you fill with Naltrexone? Are you thinking about it for relapse treatment of for relapse preventing?
    I do not remember how you got an idea to try it, I will read your post again, I am traveling now. Be good, Elena

  6. jmankoff said,

    May 6, 2013 at 8:22 pm

    I am hoping it will reduce the frequency/severity of the relapses (my hope with any new supplement / treatment :).


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