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Addison’s disease: two years post-diagnosis

September 17, 2009

This time two years ago, I was in the harsh throes of undiagnosed, untreated Addison’s disease. I find it difficult to write about personal stress in my life, and Addison’s disease has stress as its epicenter. I find it even more difficult to write about my own church as a source of stress, but all relationships in one way or another come with stress, and a church presents a lot of relationships. These difficulties notwithstanding, I hope my account might be useful — validating, vindicating, or encouraging — for other people with Addison’s who have experienced, for whatever reasons in their own lives, overwhelming stress. The point is, each person must manage his stress where he encounters it.

Many people experience “anniversary stress” around the same time that a very stressful event occurred in a previous year. I suppose right now I’m experiencing anniversary stress over events and sensations that I experienced in the months before and following my diagnosis.

Two years ago, the normal stresses and buffeting of ordinary tasks and interactions with others seemed life threatening — and they were, without sufficient cortisol to mitigate the adrenaline my system produced in response to the stressors. If you don’t have Addison’s disease, I don’t think I can sufficiently explain the experience, but I would hope to increase your understanding if you have an Addisonian in your life.

Memories of the time immediately preceding my diagnosis recall the anxiety, resentment, foreboding, and physical symptoms that made every day terribly stressful. I stood outside on a sunny 75° August day, gripped with a chill that made my chest ache. I hyperventilated when I attempted to say good morning. I became faint walking the length of my hallway to my laundry room. I slept during the day for the first time in my life, and began vaguely to wonder whether I would simply come soon to the end of any waking time at all.

Friends persisted in inquiring when I missed church, offered help I did not want — and I snapped at them. My life purpose was reduced to one commitment: All I required of myself was to show up in my living room each day, dressed and in my right mind, and the latter part was negotiable. My husband required no more of me than I required of myself. In my fear-darkened heart, I cut off everyone else except my Cat who made any demands of me at all. I perceived my friends as useless at best, or, at worst, stressful and thus harmful to me. Each day brought a sense that rape, pillage, famine, and war were in the air, except that my favorite descriptor of the four characteristics of Western civilization no longer seemed funny.

People with Addison’s disease need strategies to avoid situations, people, and things that stress them. It doesn’t matter what the rest of the population objectively thinks should or should not stress them. I am by temperament anxious and sensitive. In my experience, endocrinologists know very little about Addison’s patients except that hydrocortisone will keep us alive. It will manage the disease as they say, but I believe that management is code for maintaining the Addisonian as if he were a normal person under normal stress. If that isn’t who you are, Addison’s disease might heighten who you are, making you more susceptible to frustration, stress, anxiety, and sensitivity, because you simply don’t have sufficient cortisol to mitigate the adrenaline that responds to daily life as you experience it. I have always been claustrophobic and nervous in crowds, for instance, but for the past two years, it’s been daunting for me to stand in the restroom line at church. The fact that my legs often ache doesn’t help either. I accommodate myself and head downstairs during the service when no one else is there.

Addison’s disease is chronic adrenal failure. There isn’t a cure. It doesn’t get better. It gets managed. Management levels are not always satisfactory.

It is difficult to explain how noisome it can be for someone without strength or energy to be constantly asked how he is feeling. I recall many instances when friends from my church, whom I called, in my wicked heart, the pew police, would enumerate my absences and emphasize how much I was missed. How I wished for them to reassign themselves to another beat! I assigned them to my blog, where I chronicled what I could about what I was going through, so that I would not have to respond to them individually. Regrettably, my blog became for some a sort of baby monitor. Why am I so sensitive to these sorts of things? The friends who inquired after me are caring women. Their well-meaning solicitousness is a common dynamic among women. I’m simply a woman who is not at home with it.

My examples of stressful situations are taken from my church only because I have almost no other contexts of expectation or obligation, and those things tend to be the sources of stress in my life. I have largely withdrawn from keeping up with politics and current events. Our household is solvent. We socialize very little, I don’t work outside my home, and I tend to avoid gathering with more than one or two friends at a time. About the only time I am ever around as many people as I am in church is when I am in a restaurant — and there I am invariably happy and unstressed. A close-knit church has its advantages and its stresses. Sometimes simply bypassing a usual routine and doing something else relieves accumulated stress. Visiting a different church can make all the difference. It’s all part of management.

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21 Comments
  1. September 18, 2009 5:31 am

    Lauren, I appreciate what you are saying about ‘management’ being as important as ‘treatment’. Each winter recently I have experienced an inability to tolerate even phone calls or emails without violent shaking (not chills, more like a shock response to what amounts to daily social stress) — this is apparently part of dysautonomia messing up the coordination of the adrenal reactions — I can understand some of what you are describing here (what a really difficult time you went through, Lauren). I understand about the sense of rape, pillage, famine, and war as well.

    This year we are going to be more pro-active in our approach to this, and yes, I have had to conclude that regardless of how I am perceived (and I hate to be perceived in the wrong way: I hate not only the guilty way it makes me feel but the hurt it might cause others), I *must* avoid many things other people would never even think of as ‘stressors’. I think you are right that the concern expressed by others is real, womanly concern and not ‘monitering’ for backsliding etc: it is our own fear of being misunderstood that translates it into a further stress factor when interacting at all is so difficult. It’s been good for me to recognise this, without adding yet further guilt for struggling against the guilty feelings of being so misunderstandable. 1 Cor. 13 continues to be very important to breaking that cycle for me as a significant part of its application is to assume that others are assuming nothing ungenerous about me. So I can, without all the ‘guilt-resentment’ anxiety piled on, act as I must to avoid anxious situations, contact with people etc., and trust that God has given them grace to understand.

    I’ve found this trust to be justified almost to making me ashamed of having ever doubted — in you as well. I pray God will comfort and overwhelm you with the same. Thanks for your wisdom on this, it helps me. I learn that friendship, the church, etc — aren’t a bargain where we have to put in so much to get so much out. They are always giving out so much more than I could ever put in.

  2. September 18, 2009 6:23 am

    Heidi, you have put this wisely, womanly, and well.

    To be very prosaic, the boldest illustration we have that the church and world are separate spheres, is their very distinct economies. I think of “they did not require an accounting… for they dealt faithfully” at 2 Kings 12:15.

    I love you dearly and pray for you as winter and its challenges approach.

  3. September 18, 2009 6:33 am

    That’s a beautiful verse Lauren, and just like you to notice it (I would never have thought of it in that light on my own). I love you dearly, too.

  4. September 18, 2009 7:35 am

    Another heartening passage along the same lines is Exodus 36:5-7:

    Let neither man nor woman do any more work for the offering of the sanctuary. And the people were restrained from bringing,
    for the material they had was sufficient for all the work to be done — indeed too much.

  5. September 18, 2009 5:15 pm

    Lauren,
    I like you.

    Love,
    R

  6. Grace RN NJ permalink
    October 31, 2009 1:43 pm

    Lauren,

    I found this site googling the universe for a way to live while living with Addison’s disease.

    I was diagnosed July 2009 with secondary AD-also have partial pituitary failure. Prior to diagnosis I felt myself rapidly ‘slipping’; barely able to continue working fulltime at a demanding but loved job. Since July I have been on 3 different steroids and have seen two endocrinologists, neither of whom are helping.

    I am unable to work now, have few good days, and am comtemplating applying for Social Security Disability. It’s been interesting, to say the least.

    There are more stressors outside the few that doctors recognize. Eating at my in-laws is more stressful than dental surgery, so I need to be able to give myself permission to stress dose!

    This really hit home!!

    “… There isn’t a cure. It doesn’t get better. It gets managed. Management levels are not always satisfactory…”

    I had 57 years to get used to my old body but 2.5 months is not enough to get used to the new one. Hopefully, the second learning curve will be a little shorter!!

  7. October 31, 2009 5:01 pm

    Grace,

    I am very grateful that you were providentially directed to my site of all the Addison’s sites in the Google universe. I hope you don’t mind if I e-mail you.

  8. Grace RN NJ permalink
    October 31, 2009 6:15 pm

    Lauren,

    It would be an honor for you to email me. Really, how many of us are there??? One per 100,000 people? Please email!!

  9. October 31, 2009 6:49 pm

    Yup: one in 100,000.

    Note to other readers: we’re already at our third reply stage in the great new e-mail extravaganza…

  10. November 18, 2009 9:28 pm

    Please include me on any general Addison info e-mails, when appropriate–I’d love to be able to communicate with people who live with this every day. Your post about how you feel validates some of what I sense in Annie–she doesn’t need a ton of people around her, or too much activity. This really helps me understand the day-to-day realities of living with Addison’s. Thanks.

    PS. Thanks, too, for the verse you shared on Annie’s blog. So encouraging.

  11. Grace RN NJ permalink
    November 19, 2009 1:33 pm

    Jean,

    Can you send me your email address? Mine is puub@comcast.net

  12. Sarah permalink
    April 7, 2010 1:19 pm

    I have just been diagnosed with Addison’s. For about 3 years doctors have called me “lazy” and told me there is nothing wrong with me. I cried when I read this, it was too close to home… I could have written that myself.

    Thank-you for sharing!!

  13. April 7, 2010 2:01 pm

    Sarah, I can still hear the voices of doctors saying, “There’s nothing wrong with you,” and of so-called friends saying, “Oh, but poor so-and-so has….” Thank you for sharing; you make my “lazy” day.

  14. Grace RN NJ permalink
    April 7, 2010 6:28 pm

    Lauren, I’ve decided that the majority of endocrinologists treat people with AD with the ‘one-size-fits-all’ suit. “Take cortisone, stress dose only for severe infections, severe emotional stress ie death of a loved one (what, illness of a loved one is so much less stressful?) and surgery.”

    I had a recent sinus infection and endo #2 said don’t stress dose. Good thing I’d already upped my steroids to get through it.

  15. April 7, 2010 6:41 pm

    Hi, Grace… I totally agree. The one-size-fits-all works for the doctor, and if the patient can’t cooperate by fitting it, well, whose problem is that?

    But taking more steroids doesn’t always help. As rational as it seems that it should because it is indeed cortisol, it doesn’t seem to cause the body to respond the same way. I don’t know why, but neither does the endocrinologist. He says these issues that Addisonian women seem almost uniformly to experience are not endocrine. That’s code for “there’s nothing wrong with you.”

    Cortisol is part of our original equipment. Hydrocortisone that we get to replace it is not: it’s synthetic, and who knows that it actually works the same way? If you take 10 mg and you need 50 because your body would normally have produced 50 in a given situation, obviously something has to give. So the sensation of complete systemic breakdown should not seem surprising. But I invoke my axiom: I don’t know how these things work.

    I’ve been thinking about you. The Boston countdown is underway! I so hope you get some answers and relief at the Harvard research center.

  16. Grace RN NJ permalink
    April 7, 2010 6:52 pm

    I wish there were a way to spot check cortisol levels the way we check blood sugars-otherwise it really is throwing mud until something sticks. Good news, of a sort-was told today by endo #3 (3 endos in 8 months-sign something wrong here?) that I am also hypothyroid and she started me on synthyroid. Yippee!! Maybe another puzzle piece has fallen into place. If patients aren’t active, investigate, and educate themselves on their disease processes-as we know, especially if we have a rare disease-then it’s hard to get optimal results.

    There is alot of misogny in medical care, especially if you’re ‘the zebra’. As the main character in “The Good Wife” said “…guess you’ve seen a woman get angry…”

  17. April 8, 2010 7:10 am

    Yippee is right! But it’s also incredible that no one tested your thyroid before — it’s always a suspect as the next-to-go thing with Addison’s. That could account for about all of your persistent symptoms. My #4 endo decided no lab work was necessary this year. Fortunately, my PCP is more vigilant.

  18. Grace RN NJ permalink
    April 8, 2010 7:37 am

    And to think I felt bad going to three endos-Boston will make it #4. As far as local endos go, I may stay with #3 as she admitted she didn’t have many patients with AD, but did a far more thorough history and recommended tests not yet done ie scanning of pituitary and adrenals. And-she called me at home with the test results.

    I had been my thyroid tested multiple times over the past 8 months, with results varying from low to normal but was always told ‘we’ll just watch it’.

  19. April 8, 2010 8:43 am

    Sometimes “let’s do it” beats “let’s watch it.” You can always undo something; watching never changes anything.

  20. kristinh permalink
    January 4, 2011 4:48 pm

    Lauren…I stumbled across “always the storm never the calm” when goggling…boy did that hit the nail on the head! i was diagnosed a year ago…i knew that at 35 i was too young to be blacking out after only walking up a flight of stairs. my legs hurt so bad i couldn’t get down to my children’s level. I was freezing all the time, yet had night sweats…
    God bless my doctor for figuring it out…she saved my life as you well know. One year later I’m MUCH better, but still SO tired. I’ve been simply living and taking the pills for a year…but after finding myself so tired again but worse…i’m SO intolerant of anything overwhelming and i’m so easily frustrated. (imagine me uncomfortable, because a tag itches, or i’m too hot/cold etc., add one crying or whining child plus one child that simply needs something and i’m off my rocker crazy.) I’ve never been a patient person…but this is ridiculous. I’ve never been an anxious person and here that comes as well… I’m not up for taking drugs to calm me…so i just made an appointment with a homeopath dr…i’m praying that leads to some good things…
    i do love my endo. she is wonderful…she’s advised to me that treating an addisonion that has lost (in a women’s case) her ovaries and thyroid is much easier…every day we are still producing hormones that combine with our synthetics…i suppose that is why every day can be a little different :)

    so anyway, my point is…after a year of living-i’m really seeking information. the title of that post hit home because it seems that my husband is always saying…”there’s just always something”
    well yes…really there is… Im a working mother…that, by the way, owns her business, doesn’t just go into work for 8 hours a day and then leaves her work at home ;) and i have two children under the age of 6…I’m a perfectionist (ugh), my husband has OCD (so i work hard to minimalize his outbreaks by keeping the house in tip top shape at all times-unless i’m exhausted..which seems like so often now..i love the blog where you wrote about the placebo ;)) and oh by the way sprinkle on top that i have addisons… there really is something all the time…reading about others that understand that is liberating…
    i AM tired a lot even though i’m on medicine…do i like it-no! do i try to be tired to get attention-no! would i rather be running around with my kids-yes!!!

    anyway…hope you are still writing…i know some of these posts are old. my best to you for dealing with all of your other issues…it must be an uphill battle every day.
    thanks for writing something that we can all glean from but also simply feel in the company of other addisonians…as we would all never wish for others to be sick…it’s nice to have “friends” that understand.

  21. January 4, 2011 5:11 pm

    Kristin, thanks so much for writing. This blog will always be here, and I am still writing, but I have changed venues and started a new blog kind of to commemorate my new location when we moved last fall from Tacoma to Clarkston, Washington. I figured a new life warranted a new blog. If you go to my homepage here, there is a send-off post with the new blog’s address. But here it is: http://eelCreek.WordPress.com

    A reader/friend/co-author of the Addison’s Diablog post suggested that I start some sort of an Addison’s ministry, but I declined, in favor of remaining eclectic since I write about so many other things and actually have kind of stopped focusing on Addison’s in particular. But you revive in me the thought that there are many readers out there who share the story, and it is by no means the case that I got all well and left! On the contrary, I deal with the same Addison’s issues that I always have, and they are all of the same magnitude. Addison’s doesn’t improve.

    I don’t have children at home, and I know that your assignment is the hardest. But I have fibromyalgia and various types of arthritis that certainly do not to mitigate the Addisonian symptoms.

    If you would like to use the contact form that is on my Authoress Page, I will gladly respond to you personally.

    Take good care, dear. It’s a tough assignment, I know. It would not have been given to you without the grace to bear it.

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