The anxiety of having a medical procedure with an unpredictable body

Most chronic illnesses bring a degree of anxiety with them. Experiencing symptoms and being diagnosed with a chronic condition often means entering into the unknown — we do not know for sure how we are going to experience the condition, how or whether it is going to progress, and how it will impact upon our lives.

Something I hadn’t anticipated when I first started seeing doctors about my multiple chronic illnesses, however, was that, on occasion, it would be those very doctors that were apprehensive about how to treat my unpredictable body, which then, in turn, made me apprehensive about my very being . . .

One of my conditions, mast cell activation syndrome (MCAS), has dramatically changed how doctors treat me, both in terms of ‘treatment’ in the medical sense of prescribing me certain medications and supplements, and ‘treatment’ in the sense of how they respond to me when a procedure or surgery is necessary. As the organisation Mast Cell Action notes, in a person with MCAS, the mast cells are inappropriately triggered to release histamine and other chemical mediators. At its worst, for a minority of patients with the condition, MCAS can cause the person to go into anaphylaxis, a potentially life-threatening event.

So far, I am fortunate that I haven’t ever experienced anaphylaxis, and my symptoms are kept fairly under control with medication and lifestyle changes. But that doesn’t stop doctors from being apprehensive about my potentially unpredictable body. They view it with suspicion, worry, doubt. My body ‘may’ react in a potentially dangerous way. It may be triggered by a medication, or a procedure. It may not ‘follow the rules’ in terms of how it responds to environmental factors, stress, treatments. Sometimes it feels as though my body is viewed as an unknown entity — potentially doing things that are unanticipated, ‘abnormal’ to use doctor-speak, and highly problematic.

So doctors, quite rightly, take extra precautions when it comes to my potentially reactive body. Being the difficult entity that my body is, it has to be the subject of careful observation and management. Simple medical procedures are never simple, for example. Over the past few years I have had to go through a procedure that usually involves a local anaesthetic without one. Another procedure which is usually over and done with in ten minutes in a regular clinic room was undertaken in an operating theatre, with nurses and anaesthesiologists buzzing around me and machines beeping and whirring away. So instead of being in and out of a clinic appointment in half an hour, I had to be in the hospital all afternoon and into the evening wearing a hospital gown and compression tights.

The experience that I will never forget is having an operation that is typically performed under general anaesthetic under a local one. The doctor was too concerned about how I would react to a general anaesthetic to risk it. So I was awake for the whole procedure, a make-shift curtain shielding me from seeing what was happening to my body. It was insisted that an anaesthesiologist sat by my side monitoring my vitals for the duration of the procedure, just in case. There were extra people in the theatre, just in case. It was done in a particular hospital that had an Accident and Emergency department (the ER for US readers!) rather than my local hospital that does not, just in case. I had to stay in the hospital for monitoring for the rest of the day, just in case.

All these ‘just in case’ aspects of the procedure are right. I am not criticising the doctors for the care I receive in any way. Their caution is appropriate and just. They are putting my safety first and I am very grateful for that level of care.

And yet, saying that, the extra care puts me on edge. Makes me anxious. Puts the ‘what ifs’ at the forefront of my mind. What if this time my body does react? What if I have to use an epi pen for the first time? What if it goes wrong?

All of that makes me more stressed, which, paradoxically, is one of the main triggers for mast cell activation, in my case at least. My heart-rate is raised from the anxiety, my body slightly shaky, too many anxious thoughts spinning around my head. It is hard to know how to handle this worry over my body, this extra caution as doctors don’t trust my body to behave the same as someone without my condition. I am confused about the whole thing.

Ultimately, this extra attention results in a bind for me that I would imagine quite a lot of people with certain chronic illnesses feel. On the one hand I am grateful for the extra care. It is heartening to know that doctors put my best interests first, and want to minimise any risk to me. On the other hand though, this extra care makes me more scared of my body, of what it may do. It increases the thoughts about potential problems that I can usually push to the back of my mind. I want to tell the doctors that they are making a simple procedure into a huge, scary and anxiety-inducing day. That while I want to be safe for the procedure, of course, I also want to feel safe all the time, and extra care and attention over potential issues with my body makes that difficult as it brings any potential difficulties to the front of my mind.

This seems to be a bind that doesn’t have an answer. There isn’t a middle-road that I can see, or that doctors can offer. All I can do, while lying on an operating theatre bed with medical staff buzzing around me, is remind myself over and over again that while my body doesn’t play ‘by the rules’ in terms of my mast cell activation, it hasn’t yet gone too far. My previous experiences of medical procedures are all unremarkable. Medications and precautions have meant that every procedure has gone to plan. No drama, no reactions. Nothing going wrong.

With many worries, about all kinds of things, keeping perspective seems to be the way to go. For the patient, it’s about not catastrophising, to use CBT (cognitive behavioural therapy) language. For the doctor, however, it almost seems that they have to catastrophise about a potentially unpredictable body. They have to plan for the worst-case scenario or the potential emergency situation and do everything that they can to avoid it for their patients. And I have to trust their judgement on this. Respect their professional opinion. So while I would rather be wearing jeans and a jumper for my next procedure, I’ll have to put up with the hospital gown now and again. Because that is the safest option.

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