Saturday, February 11, 2017

Chronic Illness and Fear

Photo Courtesy of Myers Creative Photography

I had this huge revelation the other day and I am sharing it with you because I would bet money that some of you have experienced very similar feelings.

The back story is as follows:

For about a month, I haven't been feeling right and in a way that feels different than "just Sjögren's." As I blogged about earlier this week, my main debilitating symptom has been fatigue. Now fatigue has been a Sjögren's symptom for me since day one, but this has been even more over the top than usual.

I recently increased one of my thyroid medications (I have hypothyroidism from radiation treatments I received for cancer in 1996.) and was wondering if my levels were totally out of whack. I had them tested earlier this week but I have not received the results because this is the one specialist I have left that just cannot get their act together enough to get me results in a prompt manner; last time it took almost four week...ridiculous!

In addition to the fatigue and thyroid checking, I was working a little more than usual and I work in a school. Every single germ known to mankind was circulating through each of the three schools I work in and next thing I know, I was down for the count about two weeks ago and instead of getting better, I got much worse with a respiratory infection, fever, the list goes on and on. And I just couldn't bounce back. I finished a round of antibiotics and now am on day four of a higher dose of prednisone for my lungs (I have autoimmune related respiratory issues). Yesterday was the first day I was able to leave the house on my own and actually participate in the world.

For a few years now I have been seeing a therapist to help me deal with having a severe chronic illness. My main reason for starting to see her was to help me find more balance between my illness life and the rest of my life, especially in my relationships. She has done that and so much more. However I had not seen her for about a month and I finally got back in to see her a few days ago. I was a bit of a mess. I was totally overwhelmed with not only my Sjögren's symptoms and issues, but the current respiratory/flu/cold junk I had as well. I was especially worried about the fact that I could barely move my body from the bed to the bathroom. It took me hours that day just to drag myself to the car to get to her office.

I was freaking out about how sick I was, more so than I thought was appropriate at the time. I mean seriously, EVERYBODY in all of western Massachusetts has been sick, I was no exception. Granted yes, I have underlying issues that can make things like a cold or flu much worse for me, but still. I was getting really nervous that I couldn't just bounce back.

So my very rational therapist pointed out to me that yes, there's a lot of illness going around but also that it takes time to recover from these colds, flus, respiratory infections, etc. And that maybe, I have been feeling so poorly over the past month because like everyone else, I have been hit hard and need whatever time it takes to heal and recover.

Now this seems like common sense and it is,and that is when I had my revelation.

I was scared.

Because I was sick for a more prolonged period of time than usual, I was scared that it wasn't just a typical "you will get over it" type of winter illness.

No, I was afraid that THIS would be my new normal.

Why would I be so panicked about such a seemingly irrational thought? Tons of people get sick in the winter.

Because in 2008, this IS what happened to me.

In 2008, I went from a fully functioning 30-something to a disabled, out-of-work 30-something in about a month. Because nobody knew what was wrong with me at the time, I truly thought I was dying. Life as I knew it completely changed in every single aspect: my job, my home, my finances, my marriage, my sense of identity, and especially how I perceived myself. I went from working as a full-time nurse to working as a full-time patient. Almost everything was taken away from me.

I realized that all this current business was all about FEAR.

I was basing my current thoughts about how I physically felt on my previous experiences, rather than on the reality of the current situation.

I don't know about the rest of you, but fear has been a common theme interwoven with having a chronic illness like Sjögren's, and the numerous other health issues that plague me as well. And I have to tell you, fear is a bitch. I have been working hard to get through those fears over the past year or two: fear of getting sicker, fear of losing my disability or health insurance, fear of becoming totally incapacitated, fear of traveling...what if something happens while we are away?? Fear of losing more friends...fear of never being able to support myself again...I could go on and on. But this realization that I was now afraid of a typical winter respiratory illness and the symptoms associated with it being my "new normal" threw me off a bit because until that moment in the therapist's office, it never dawned on me that was why I was so upset.

Here's the thing though and I wholeheartedly believe this. Once you realize your fears AND acknowledge them, you are halfway to defeating them. By recognizing them and facing them head on, we can slowly begin to master them. For me, in addition to therapy, meditation and yoga has been helpful. Meditation because it allows me to clear my head, as much as possible, of the constant stream of racing thoughts and worries I often have. Yoga because it helps me gain some control of my body, breathing, and thoughts. Yoga, shows me what my body is capable of and therefore lessens the fear of my own body.

I would be interested in hearing about what fears you may have associated with living with a chronic illness and how you deal with them, if at all.

 Feel free to comment below...


  1. I loved your book Tales from the Dark Side. Well done writing it, I found lots to help me in it.
    The worst fear I have with Sjogrens is what will I get next? I am a poet and lead a very quiet life but find that inspiration seems to have left me because i am always thinking about Sjogrens. I was diagnosed with it years ago but it has flared up lately particularly in my throat making swallowing difficult. What is so nice to know is that there are lots of us out there to share our stories with and any way we can. Best wishes, Patricia Huth Ellis

    1. Hi Patricia, thanks you so much for the feedback about the book. The same thing has happened to me the past few months: Sjögren's is front and center and my writing inspiration disappeared. I'm hoping to get it back soon.

  2. I just left you a message on your previous post suggesting that you have your thyroid checked, both motility and fatigue can be caused by thyroid out of whack. Then I come here, and see you already did. Has it helped? Are you recovering from your respiratory crap?
    As far as fear with Sjogren's, mine is in decent control right now, but I have sciatica, and have the same fears about this being the new normal.

    1. I know this was months ago, but yes, my thyroid was a little out of whack. It has since evened out and I am no longer having regular respiratory issues. :-)

  3. I can very much relate to this. I'm sorry you had it happen. I also have several autoimmune diseases, but on top of that I contracted TB where I work last year. The treatment took 9 months and was horrible. After that happened I "returned to my normal life" but "fear" entered the picture and became a close companion. I was ready for some new horrible disease to hit me and kill me this time. If someone coughed I would flinch. If I had to shake hands with a stranger I would use a ton of hand sanitizer as soon as I could. Talking about it helped. But it also took a lot of TIME. Very smart women who work hard are not that great at taking time to heal (I'm sensing we're the same on that page.) It will get better and easier as you get stronger. You're brave and wise to talk about it. Talking helps.

    1. Yes, you hit that nail right on the! I am learning though. I am scheduled for surgery tomorrow morning and I absolutely have to be on bedrest for the most part for at least a week, so my hand is being forced and I think I will learn something from that. Thank you for sharing your experience...much appreciated!