When I said that this would be an unflinching look at my journey, I meant it. Today I want to write about Illness Anxiety Disorder. Actually I don’t want to write about it. I want to pretend it’s not happening. But I know that adage about ‘what you resist persists’ is very true for me when it comes to anxiety. So I am going to address it now because the truth is that I have been trying to avoid it and trying to pretend I’m okay with it hanging around. And surprise! The damn anxiety is persisting.
If you don’t know about Illness Anxiety Disorder, you’ve probably at least heard of hypochondria. In the DSM-5, Illness Anxiety Disorder replaced Hypochondriasis. You can learn more here. I have had both the care-seeking and care-avoidant types of this disorder. Currently it leans on the side of care-avoidant, but with some really supportive, understanding doctors I am finally getting the courage to seek care when appropriate.
I don’t know for sure when I began experiencing Illness Anxiety Disorder. I do know that I often felt sick as a child when I was in stressful environments, or overwhelmed. So perhaps that fits the criteria. And when I go through journals from when I was in my early twenties, I find evidence of medical related anxieties. In fact, one page goes so far as to ask ‘Why do I always worry that I am dying?’
One of the big events that has triggered the adult version of Illness Anxiety is the passing of my aunt when I was twenty-one. She got ovarian cancer when she was in her early forties, and died from it at forty-seven. I was very close with her; in fact she was my godmother. And that experience was very traumatic. Watching her suffer was the most difficult part.
So over the years, my anxieties have often been expressed as illness-related anxiety. I now know that this is the way that my nervous system has learned to protect me and keep me safe from the things that are actually bothering me. Sometimes there are things that I don’t consciously recognise as upsetting. And sometimes I am conscious of what is bothering me, but I either outright decide I don’t want to deal with it – or I tell myself that I’ll get onto it later because I am too busy to deal with it.
And so when I am stressed for a while, and not doing the work of ‘metabolising’ my emotions and experiences, as my psychologist would say, the default anxiety shows up. And that is the illness related anxiety. I will write a lot more about this type of anxiety at another time, as it is the main way that anxiety shows up in me in. I actually initially typed that it’s the main way that anxiety shows up for me and I think that in itself is worth thinking about. As much as I may say that I hate anxiety, it is important to remember that it is working for me. In the case of this illness anxiety disorder, there are definitely protective mechanisms at work, which we will explore. But first, I want to describe how this is currently playing out.
So a few weeks ago, I began to ‘notice’ my abdomen on my left side. My left side has been more problematic for me, as I tend to get ovulation pains and other menstrual pains more predominantly on my left. In the beginning of this current bout of illness anxiety, there was no pain on my left side. There weren’t even any sensations. I just ‘noticed’ the existence of that part of my body.
And then my OCD kicks in. Checking. Ruminating. Thinking about my left side over and over again. And then the judgement starts. ‘Not this again. Why are you like this? When will you ever just be okay?‘ And then the fear that it won’t ever stop, along with the hatred of the anxiety is mixed in with the judgement. ‘Why won’t this anxiety just fuck off already? I am going to have to live like this for the rest of my life!’
I do have some things I have learned to say back to these types of thoughts. ‘It’s okay. You’re fine. You’ve been through this before and it does stop eventually.‘ And I ask myself what is really bothering me. And I answer it with a million things. And I want this acknowledgement to be enough to just be able to move on. But it’s not. Yet, I don’t recognise this just yet and I try to just get on with things.
And then after a day or two of ‘noticing’ and ‘checking’ that area of my body I feel a sensation. A tightness in that left side. The big fearful thought arises: ‘Maybe it’s cancer’. The more logical side of me thinks ‘Maybe it’s just constipation, or digestive pain. Or maybe all made up in my head because I have put so much attention on ‘noticing’ that area. Maybe I just have put so much tension in that spot that I have created tightness. Maybe it will just go away.’ Maybe. But I can’t seem to stop thinking about it. And it’s a futile fight. So I tell myself things like ‘You’ve had this kind of sensation in the past, and you’ve been fine. It’s just stress.’ But what am I doing about this stress? Not much. Still pushing through, putting it on hold until I get things done. But I know that I am doing this, and I know that I don’t want to address the stuff alone. So I tell myself I can talk about it in my next session with the counsellor or psychologist.
As I get closer to my period, I notice more issues. Actual pain. Pain that I used to only get on the first day of my period, but now I’ve been getting for two or three days before, and sometimes throughout my entire period. And so I start to worry that I have ovarian cancer. Or that my very small fibroid that was found last time I was extremely worried about this pain and had an ultrasound done has grown and I may need surgery. I am worried that if I tell a doctor I will have to have tests run, and then I will have to wait for results. And I just don’t know if I have the strength to go through that.
And then I am seeking reassurance. I ask my husband if this is a new thing I am worried about. He assures me that I have had this same pain for years, even though it is lasting longer now than it used to. He reminds me that I have been told that during perimenopause symptoms can be worse and longer lasting.
I message my mother who had fibroids, and tell her about my issues, and she suggests I go to a doctor. Which then triggers more anxiety in me. Is she worried that it’s something sinister? I make up stories in my head, which is easy to do when you’re making assumptions based on text messages. I tell her that I am now more worried, and she tries to reassure me but this is just another step along the anxiety pathway.
As the pain goes on for about a week, I get progressively more stressed out about it. Every time I feel any pain, it’s a trigger for anxiety. And so it just gets worse and worse. I decide I probably have endometriosis. I want to Google. But that is something I know is trouble. I used to compulsively Google symptoms or suspected diagnoses. I rarely do it now. Sometimes I will ask my husband to do it for me, but to do it myself – it’s something I really try to avoid. I know from past experience, it’s much more likely that I am going to get more frightened than reassured.
So I start with my books. I look at books I have on hormones and perimenopause. But that doesn’t seem to provide the information I am seeking, so I do the Google thing. But really, I don’t get any certainty from that. And I knew I wouldn’t. But I couldn’t stop myself.
And I don’t beat myself up for it. Yeah, it’s disappointing, but I know I need help. I talk to my husband again, and come up with a plan. I will see if the pains go away after my period finishes. I have a consultation with the hormone doctor on Thursday. I will talk to her about what I am experiencing. My husband will be there to support me if I am afraid. On Friday I have an appointment with my counsellor. And on Monday I see my psychologist. I have a lot of people to support me.
Even with a plan in mind, the anxiety isn’t gone. I still find myself worrying about every sensation on that left side. I find myself checking for it when my mind isn’t focused, or when I am feeling extra stress. There are many times throughout the day that I am wondering if I am okay. I have probably put my attention on my left side hundreds of times a day.
And I find the other expressions of anxiety surfacing. Worrying about food being contaminated (this is another big one for me). Allowing myself to be chased off the balcony by a wasp out of excessive fear of being stung. Being unable to cope with being in public without feeling really nauseous.
That said, the anxiety and rumination haven’t been as bad as I’ve experienced in the past. I am better at defusing the thoughts and letting them go instead of getting carried away with all of the what ifs. In fact, while I have had some of those ‘holy shit’ moments where there’s a brief panicky reaction, I haven’t had any full blown panic attacks over this. Which is a huge relief because before I started medication in August, I was having frequent panic attacks which got worse over time, eventually culminating in a two week period where I had multiple full on panic attacks each day. Once I started an SNRI medication, the panic attacks subsided and the anxiety lessened greatly.
I know that there are a million reasons right now for my stress and anxiety. And I know that I am always having to find the line of where my capacity is on any given day. And often, I only find it by stepping over it. The things that were working before aren’t enough right now.
Maybe that’s because so freaking much is going on. I created this website and launched this blog and this has been a huge step for me. And I have been doing more work. And my medication for anxiety has led to significant weight gain, and I have had to change how I eat. And the kids have been home for school holidays. My husband’s work schedule has been constantly changing with little notice so I feel like I am always adapting. I started a new medication (Prometrium for progesterone during the second half of my cycle). And I am really scared of taking new medications. My daughter had her first sleepover at a friend’s house. There’s been the Omicron covid outbreak to contend with. My youngest got diagnosed as autistic with ADHD and we had to tell her and support her through that. Her sleep has been awful so I’ve been doing extra settling with her at bedtime and in the middle of the night. We got a date for her dental surgery and I am really worried about her going under anesthesia. And getting the kids ready to go back to school has meant extra contact with school personnel and psychologists. And then there are all of the school emails I’ve received over the last week about covid rules, and RATs, and already today (day 2 of the school year), I got an email saying my daughter’s primary year group had a positive case and we need to watch for symptoms. And that sets me off wondering if I am going to get those kinds of emails multiple times a week. And I just don’t want to hear about it, read about it or deal with it anymore. And that’s just some of the many things piling up on me right now.
But those are just the daily life things. I know that underneath all of this anxiety is trauma. And I know that there are some really difficult topics underneath this anxiety. As I type this, as I know what is going to come up – my stomach goes into a knot, and does a flip, and my chest tightens (things I would not have noticed a year ago before getting help). So when I said that anxiety is shifting my focus to all of those things on the long list above (which are legitimately stress-inducing) and away from the things that are buried deep. The things that the vulnerable part of me wants to be protected from, and would like to avoid. But the part of me that has seen healing already happen – this part of me knows that it’s time to address these deep wounds.
And while I could go into the emotions underneath the anxiety by myself for a little while there, I need more help with that again. The good thing is that I finally have a good support team. They’ve taught me how to take better care of myself, and to have compassion for myself. And part of that compassion is knowing that I can ask for help when I can’t do it on my own anymore. And it’s taken a long time to find people I trust, and who know how to help. And it’s taken a long time to admit that I need people to help me. Because right now when I say to myself ‘What’s underneath this anxiety’? the answer comes back that there are traumas that need to be addressed, and I don’t want to address them alone.