While suffering from rheumatic fever at the age of 5, I read “What Katy Did” by Susan Coolidge, and it had a profound effect on me. When Katy has an accident and is bedridden for a long time, she takes a relative’s advice about how she should behave as a sick person, and becomes a pillar of sweet and composed silent suffering. I had won praise and admiration already for how good a girl I had been, and I was determined to be every bit like Katy. I therefore endured the long-term effects of rheumatic fever, and later the onset of osteoarthritis, with smiles to hide the pain. The pelvis permanently damaged in childbirth was harder to bear, but I struggled on, as I did with endometriosis, a hysterectomy, and the diagnosis of early osteoporosis. I was determined to remain upbeat, and nothing changed when I took the latest hit eight years ago, fibromyalgia. Or so I thought.
The fact is, I have only realized recently how severe my mood swings can be. I believe my life-long determination to be like Katy had left me in denial, seeing a low mood as a “bad” thing. It isn’t bad and it isn’t wrong, though. It simply is.
As a symptom of fibromyalgia, it can be a symptom in itself with no identifiable root cause. It may sometimes be a symptom of an impending flare, however. Of course, if you are fatigued and in pain, it’s natural to feel down, but there is another category of “low mood” I’ve experienced, which seems to accompany chronic illness, such as fibromyalgia. For me, it’s rather like a brief depressive episode, as if the Dementors from the Harry Potter novels swoop down and suck the joy from your world. It isn’t the same as depression (I’ve been diagnosed with that in a couple of severe episodes), as it can lift just as suddenly as when Harry eats a bit of chocolate.
Being in denial of the fact that this can happen to a normally even-tempered person like me, I tended to overthink it and analyze too much, looking for reasons, situations or somebody to blame. I would search my memory and tell myself that such-and-such or so-and-so had been working on me until it affected my mood. Sometimes, I wouldn’t acknowledge my low mood until something upset or angered me, then I would blame it as the cause when, in fact, the low mood already existed and had triggered the reaction. It was probably something which wouldn’t have annoyed me at all on a “normal” day, or maybe only a little, and in any case, I would have handled it.
For anyone who can identify with this, I would suggest the following advice:
1. Acknowledge that your mood has swung to low without judgement. It doesn’t mean you are a negative person, or failing to cope with your condition. It’s neither your fault, nor anybody else’s.
2. Don’t think about it. It simply is. It doesn’t have to have a cause, and it doesn’t need one.
3. Since it may be a symptom of an impending flare, prepare yourself mentally and physically. Rest. Try to distract yourself with an activity you enjoy, if you’re up to it. Make sure you have everything you need.
4. Try to avoid situations which may upset you. This may include not watching disturbing news footage or engaging with certain aspects of socia
l media. It’s self-care for a short time until you can handle things again, and is not the same as sticking your head in the sand or not caring.
5. Tell those who share your life. Have the initial conversation about it when you feel well, so that you can discuss it rationally and they can be prepared. Then simply tell them how bad you feel when it strikes so they will understand and be better able to support you. Work out what it is you need from them, and be honest.
Katy Carr was a young girl who was injured and stayed in her room being cared for until she was well enough to rejoin society. Most of us don’t have that option. We are adults who have to adapt to having chronic illness, and we push through the symptoms in order to make a living, care for homes and families, or just for ourselves.
We aren’t 19th century heroines who have to struggle with saintly good grace. We are 21st century people who can still live life to as full an extent as possible. What we need is to be honest – with ourselves and others. Low moods may be a fact of life now, but acknowledging that and taking appropriate steps allows us to remain in control.