‘Steroid Guilt’

‘Steroid Guilt’ is an unofficial term used amongst patients with Adrenal Insufficiency, to describe the feeling of guilt you get about the fact that you’re not on your Baseline when you need to Stress or Up Dose

This comes about for many reasons:

– We feel like we’ve been given a Baseline Dose for a reason and so feel we should stick to it as much as possible. 

– When we need to Stress Dose, we take it personally and feel we’ve mismanaged our condition and are to blame in some way.

– Our instructions (Sick Day Rules) from our Endocrinologists say that Stress Dosing should be for specific circumstances and not a frequent occurrence. 

– Because research and case studies are a bit scarce, it’s not very well known in the medical community.  Which means that if we ask a non-endocrine specialist for advice, they will quite often say ‘you should aim for your baseline’, as this is possibly the only knowledge they have about it, even if it’s not necessarily the best course of action at the time. 

The reality is the opposite. It’s kind of like withholding a Ventolin/reliever inhaler from an asthmatic, saying ‘well, if you’d avoided your triggers properly, this wouldn’t happen‘. It’s just stupid, if you can’t breathe, you take the inhaler! Life isn’t predictable and you definitely can’t control it (I’ve tried), meaning Stress Dosing or Updosing is inevitable- you can easily get caught out. But the lasting effects of a Ventolin inhaler are virtually non existent, whereas there are side effects that come with steroids.

The most obvious one is weight gain. You can’t help it, your face and middle swell up. It also makes you incredibly hungry, not necessarily a hunger you can ignore, it actually hurts, makes you feel dizzy, gives you stomach ache, you get really irritable and basically can’t function. Ultimately, being on too high a dose of steroid can give you Cushing’s Syndrome, which isn’t any better than having Adrenal Insufficiency. It’s also because it’s a bad idea to keep changing your dose all the time, as the condition is easier to manage on a consistent dose. 

However, most patients are given the same standard Baseline because there’s currently no way of personalising it accurately, although the Day Curve Test helps UK patients a bit with this. The way the endocrine system works makes it very, very difficult to maintain a steady level of cortisol, particularly when that level is supposed to change throughout the day anyway, in line with the body’s natural Circadian Rhythm and in response to everyday ‘stresses’. There’s no way of matching the way the body compensates for this with 3 doses of medication a day- it’s just about as accurate as playing ‘Pin the Tail on the Donkey’, you have a vague idea of where the tail is meant to go, but it’s only an idea, and, most of the time, it’s slightly ‘off’. And sometimes it’s so far off the donkey, you’re left thinking ‘how the hell did I manage that?! Why didn’t I see where it was going wrong sooner?!’ So even though we know that every patient is different and requires different treatment, we feel guilty if we struggle- it’s the ‘everyone else seems to manage, why can’t I?’ mentality, which can be false and unrealistic, as ‘everyone’ has similar problems. 

This gets worse with the fact that aside from physical symptoms, low cortisol symptoms can include: anxiety, paranoia, stress, inability to make decisions, difficulty in concentration, irrationalness, suicidal thoughts, depression, perfectionism, mood swings and irritability. So at the point when you start feeling most of those is the point you should be Stress or Up Dosing, but your body is fighting against you, making you feel guilty about Stress Dosing *because* you’re feeling all of that. So you’re instantly into a lose lose situation! 

I’m currently in a period of ‘steroid guilt’, hence this post. A couple of weeks ago, I had a virus/cold, so I Stress Dosed. It didn’t turn out as bad as I thought it was going to so I had major steroid guilt, and in my (foolish) wisdom, I decided that it would be a good time to see if I could manage rapid tapers again (I can’t). I lasted a few days and then ended up getting the virus again, which led to me being admitted to hospital needing IV Hydrocortisone and fluids. Then, because my system was under additional stress, I got an infection and was given antibiotics. Now I’m feeling slightly better and feeling guilty again. Which, as I’m writing this, I can see how stupid it must sound- that’s a lot of illness for a healthy person in the space of a few weeks, never mind for someone with a complex medical problem! The most ridiculous aspect of this is the fact that if we don’t Stress Dose when we should and get it wrong, we could die. So why the guilt? 

No one really knows, but we all get it. What we need as patients, but is probably never going to happen, is a personalised Baseline which takes into account our height/weight, metabolism rates and activity level, along with the ability to monitor cortisol in the same way that diabetics can monitor blood sugar. This would allow us to correctly gauge how to dose ourselves and would mean that we wouldn’t need to guess so much- it’s the guessing that makes it hard, not the actual decision. It’s almost a relief when you have something which is clearly indicated on the Sick Day Rules check list and you know exactly what you need to do! I also try to remind myself a lot that I do the best I can and it’s ok to get it wrong sometimes.

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