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How a Relapse of ME/CFS Caused Me to Develop Anxiety

I’m going to tell you something only my husband, parents, sister and one friend know. Why would I share such a secret with thousands of people? Well, I hope having the courage to do so helps some of you know you’re not alone in your experiences. So, here goes.

I have anxiety.


I know for some of you that may not sound like a big deal. Some of you are already fabulous at opening up about your mental illnesses. That’s not me; well, not until now.

Why have I kept quiet about my anxiety until now and not told even some of my closest friends? Two reasons, I think:

Firstly, I don’t want it to detract from my primary illness – ME/CFS. I don’t want people to get confused. The reason why I can’t work, the reason why I’m housebound is due to ME, not anxiety.

Secondly, I’m embarrassed. Yes, there it is. I know being ashamed of mental illness and hiding it only goes to raise the stigma that surrounds it. So, it is time to make amends.

I’d struggled with severe ME/CFS for about four years when, without warning, I experienced a major relapse. Through pacing, I had managed to introduce some sort of stability to my life (albeit at a very low level). Suddenly, I was all over the place again and in a very dark place.

After six months, I finally discovered I had an overactive thyroid. When my thyroxine levels had been remedied, I was surprised to find, however, that I still felt stressed out of mind. My heart continued to beat a million miles an hour (day and night) and I was extremely shaky. I thought my thyroid had gone overactive again but blood test results came back normal. I was baffled.

Eventually, I got the diagnosis of anxiety. I had no idea you could feel anxious all the time for no apparent reason. It seems that somewhere between my ME relapse and my overactive thyroid diagnosis, the stress had all gotten to be too much and I had also developed anxiety. And, to be honest, it was a relief to get a diagnosis.

Many of those who live with chronic illness may experience either depression or anxiety (or both) at some point. It’s hardly surprising. When you have a chronic illness, you are continually under stress:

– There’s the stress of trying to live with such acute symptoms.

– The stress of not knowing how you’re going to feel the next hour, the next day and whether you’ll be up for that friend’s visit on Saturday.

– The stress of having to try to deal with life things such as doctor appointments, phone calls and forms to fill in, all while feeling like you have the flu.

– And above all, the stress of having to deal with all this 24/7, 365 days a week. People with chronic illness don’t get evenings, weekends and holidays off.

– Oh and don’t forget, the stress of not knowing what your future holds and if you are going to feel this ill forever.

My GP suggested I try an SSRI antidepressant for my anxiety. At first, I was reluctant. ME/CFS patients often have to fight society to prove their illness exists and it is not depression (not to put depression down at all, it’s just a very different illness). But, to be honest, I didn’t really have much choice; I was all over the place and desperate to bring back some stability to my life and try to slowly move forward with the ME/CFS.

The SSRI antidepressant I take has certainly helped to reduce my anxiety levels. On bad days with ME/CFS, I’m as about as anxious as a lump of rock. On good days with ME/CFS, the anxiety is usually bubbling quietly in the background and hardly bothers me. Occasionally, my anxiety will flare up. I have specific triggers, but generally they are related to something such as noise which doesn’t let me rest properly. It always comes down to a subconscious fear of my ME becoming worse (and, at worst, relapsing). If I increase my SSRI antidepressant then the anxiety goes away completely, but I feel much more sleepy and fatigued. It’s all about finding a balance that works.

For any of you going through the same thing, there’s a great quote I try and remember: “Mental illness is not a sign of weakness; it’s a sign of having tried to remain strong for too long.”

Well, that’s certainly true for us chronic illness warriors.

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Thinkstock photo via Rasveta.