Fatigue and Invisible Illness

posted in: chronic illness | 6
Immunity © 1994 Jane Waterman
Immunity © 1994 Jane Waterman

There are many types of fatigue, some of which are unknown to those who have never experienced a chronic invisible illness. The first kind is the result of physical exertion, which generally leads to an almost pleasant tiredness, as it is often accompanied by the knowledge of a job well done, and often a physical result or a marker of achievement. Occupations such as nursing and similar helping professions come quickly to mind. Stay at home parents, while they may not feel acknowledged personally, can observe the results through happy children and a comfortable and nurturing home. Sports people who regularly excel in their chosen field are also intimately familiar with this kind of fatigue. I’ve known this first kind, from before I became chronically ill. I was never good at sports (getting enough oxygen was an issue in my teens), but whenever I was asked to help clean, move or organize something, the result was my satisfaction. I’d fall into bed with gently aching muscles (that would feel better the next day) and I could do it all over again.

A second kind of fatigue is the kind that comes with acute illnesses: influenza, stomach flu, glandular fever, bronchitis and pneumonia come to mind. I’ve experienced all of these. There is certainly no satisfaction in the fatigue from these illnesses, and at times particularly the glandular fever (known in North America as mononucleosis), the fatigue is crushing. I was 13 when I contracted it, and experienced some complications with an enlarged heart, but then too, after 6 weeks or so, I fully recovered. These kinds of illness are hotbeds for societally approved bed rest. You’re expected to ‘sweat out’ a flu for a few days, drink lots of fluids and get a lot of rest. As awful as it feels, especially when breathing is difficult as with pneumonia, provided you get the right treatments and you have no complicating illnesses, you get better relatively quickly.

A third kind of fatigue that many may not be familiar with is that of depression. Having learned all I have of chronic illness, I’m not surprised that what affects the mind affects the body, and vice versa: for both are physical systems. This kind of fatigue is associated with the hopelessness of depression. This fatigue is so well known by sufferers and professionals who treat depression that it is usually embodied by many of the self-scoring depression inventories. Aaron Beck’s depression inventory, for example, has an option, “I am too tired to do anything.” I’ve found that such fatigue is very difficult to fight, but can be overcome. A lot of the advice thrown around by well-meaning non-sufferers such as “you should get out and do something” and “you need to get into a routine”, have their basis in documented techniques like cognitive-based therapies that can improve this kind of fatigue. There are many times when you can overcome the internal resistances of depression (in my experience, this can take an incredible amount of willpower, as well as grasping for a spark of hope) and you can take part in an activity you do enjoy, or have enjoyed in the past. You can find a temporary release from this fatigue, and with practice and a lot of hard work (let’s not beat around the bush – developing a strategy to live with depression is very hard work), you can achieve moments of your former enjoyment of activities, and glimpse that first kind of fatigue that comes from a job well done.

The fourth kind I am going to speak about is the fatigue that comes with a chronic illness such as an autoimmune disease. In this kind of fatigue, there is no amount of self-will or digging for energy that can serve you. You are dependent on the vagaries of your chronic illness, and your fatigue can never be counted on to rally, especially when you have an event or excursion planned with family or friends – if only this fact could be understood, I expect a lot of chronically ill people would experience a lot less of the third kind of fatigue I described above! People with illnesses such as Sjogren’s syndrome, RA, lupus, CFS/ME and many others often describe this kind of fatigue as similar to that I’ve attributed to acute illnesses: for example, the experience of a flu that requires bed rest. The difference though, and perhaps the difficulty of using this model, is that unlike the second type of fatigue, you will not experience resolution of the fatigue in a matter of days. It waxes and wanes, but it never goes away. That is something that is difficult to convey with this kind of comparison.

This fourth kind of fatigue can also be complicated by the second and third kinds, as I can attest – it’s easy to succumb to, say, pneumonia with untreated Sjogren’s syndrome; and it’s very easy to experience depression after years or decades of chronic illness without remission. Treating opportunistic illnesses can be very dangerous when there is an underlying autoimmune disease, and it can be just as dangerous when depression contributes to the overall feeling of malaise. There is only so much a bed-bound person can do to ‘dig deep’ and find the energy to take part in an activity. Sometimes it is not possible. I find that Christine Miserandino’s ‘Spoon Theory’ comes closest to an explanation of the limited and unpredictable energy reserves of a chronically ill person. I wonder sometimes that non-sufferers who read it truly understand the concept that on some days, even a handful of spoons is beyond a chronically ill person’s ‘grasp’. Sometiems, you do wake up with literally one or two spoons to make it through a day. If your illness does not leave you immobilized, that’s not enough energy to get dressed, let alone make it out the door. It’s difficult!

In recent months, I have finally been able to wean myself off pharmaceutical antidepressants after a 20 year on-again, off-again relationship (there was never love in the affair – just acceptance that they helped me function somewhat automatically). Having one of my illnesses currently well managed, I have a little more energy to focus on the other most important one: Sjogren’s syndrome. Over the years I’ve found supplements and immune supports that help a little, and lots of options and strategies to help me live with symptoms: eye drops, nasal sprays, mouthwashes, avoiding too much UV, and so on.

My most troubling symptom of the Sjogren’s for some time has been fatigue. Those who have heard of Sjogren’s syndrome (and it’s likely not many – I had not heard of it before my diagnosis) think of it as affecting primarily the eyes and mouth. The thought that there are systemic implications, as illustrated in my Venus with Sjogren’s Syndrome post, rarely occurs to people. At the age of 46, I have left my chosen career, and work a limited kind of part-time as a technical writer. Some days I manage a few hours, other days, nothing. Nearly every day now, I have to go to bed around 3pm as my body ‘shuts down’ for 2-3 hours. This is not an optional nap. This is a ‘body closed for maintenance’ kind of nap. You might see how working in an office would be difficult.

I asked my internist about why a fairly young person like me should require this nap, which also comes after any kind of extended activity such as a 40-minute walk. He says that my body must need it to regenerate, but I find it an unsatisfactory and very unscientific explanation. While there are many mechanisms of inflammation that accompany a chronic illness, they are poorly understood.

I have turned to nutrition as a possible solution at my naturopath’s recommendation, but despite drinking daily shakes with beets, kale, celery and chard, and overall increasing my vegetable intake, I have not felt any benefit yet. I am not going to abandon this obvious healthy improvement, but I will also continue to research other possibilities when I am able. I am also exploring a much more mysterious but emerging mechanism known as undermethylation, which I will write more about as I understand more about it. Dr Ben Lynch’s website is a source of more wisdom on this topic.

My heart goes out to every person who experiences this fourth kind of fatigue as a fact of their existence. The research done on many chronic illnesses such as Sjogren’s and lupus pales in comparison to many equally devastating but ‘higher profile’ diseases. It is still my hope (and it is a hope I reach for on the days I succumb to that third kind of fatigue) that one day we will come to an understanding of the mechanism of this fourth kind, and are able to restore the lives of so many young and young-at-heart people who are confined so unfairly to their sick beds, hour after hour, day after day, and year after year.

Now, I must rest… again.

Many blessings,

6 Responses

  1. Carmen Waterman (@Ca
    | Reply

    You so eloquently describe and explain what so many people do not understand about the chronic fatigue of an autoimmune disorder. I think helping others to understand is the beginning of finding some answers. I am proud of you!

    • Jane
      | Reply

      Thanks, Sweetie – it would be so wonderful if my thoughts could in some small way open doors of understanding. xxxx

  2. Storeylines
    | Reply

    Perfectly described – the third and fourth kinds of fatigue are all too familiar to me. Thank you for putting this all down here in a way that, hopefully, everyone can grasp. It is VERY hard to explain the fourth type of fatigue to those who have no experience of an invisible illness. Bless you, my dear Jane! {hugs}

    • Jane
      | Reply

      I know, hon. It's hard to make the invisible real. I do love when I get an idea for a post and it seems to come out conveying at least some of what I hope to say. It would be nice for people who don't have an invisible illness to understand without them having to suffer to do so! Thank you! *hugs*

  3. Amy Clifton
    | Reply

    Thank you for this post. I agree that you describe these different types of fatigue very well. I have an autoimmune illness called Primary Biliary Cirrhosis (PBC) , which destroys the small bile ducts in the liver. In the literature I've read that fatigue associated with PBC is different from that associated with other autoimmune diseases, but I've never been clear on how it's different. I know that when I am doing an activity…or even sitting and reading…it's like all of a sudden someone pulls the plug on my energy and, if I am walking, it's suddenly as though I am wearing lead boots. Very strange..

    • Jane
      | Reply

      Thanks so much for writing, Amy. I am glad you've added to the discussion, as I'm sure most people have no concept what it would be like to instantaneously lose access to energy as you describe. I know what it's like to 'shutdown' quite quickly, but when doing nothing at all to cause it – that's a challenge for many to understand, especially those who don't have an autoimmune illness. Thanks for sharing! Many blessings, Jane.

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