When your doctor says everything you don't want to hear

I seem to always set myself up for disappointment when I go to the doctors. No matter how hard I try, I always find that I am filled with hope that I'll leave my doctors' office magically cured and able to climb Mt Everest. It's a bloody curse. Shockingly, I have never left any of my appointments magically cured, so you can bet (considering I have expected to be leaving walking on sunshine) that I will feel disappointed after most of them.


Last week, I had two particularly "negative" appointments. During both we had to stop treatments we have tried and reassess what we can do next. Stopping the botox for my migraines was an especially hard kick to the chest, even though I think I have known it was coming for a while. It wasn't working as much as it once had and I think I had held on to the hope that it would start working again soon, but it has been over a year now since I have felt its benefits to that point so it was time to move on. The next day, I saw my gastroenterologist and had to hear how limited our options for my gastroparesis and other digestive issues are. We won't be replacing my nasojejunal tube at this stage, as it just wasn't doing enough because my bowels aren't happy either.


So how do we deal with "negative" appointments and the feelings that follow them? In this post, I want to share what I normally do (and now, knowing my experience with doctors, plan to do every time) after these appointments. I would love you to let me know what you do too, I am always adding things to my arsenal! Please comment on this post, email me, send a carrier pigeon or head over to my Facebook and Instagram (both Paralysed with love) and let me know what you do.



Cry; let it out

I spent most of Thursday, after I saw my gastroenterologist crying. I sat at the bottom of his building crying before I could even go out in to the shopping centre to get my car and then had a cry to one of my best friends that afternoon. Over the years, I have learnt how damaging letting my emotions build up inside can be to my mental health and I now try really hard to let myself cry when I need it. Crying is healthy and talking things through with the people you trust is even healthier. I'm not saying you have to cry but I am saying it can do wonders for you to find a way to express your emotions that works for you personally. Whether that is crying or going for a run isn't important, having an outlet is what matters.


Practice aggressive self care

I don't just practice my normal self care when things go wrong, I practice aggressive self care. Turn it up to 11 and do everything you can to help yourself. You are not a victim. You are a legendary legend, you might just need a little help to feel like that right now.



Take notes

When I feel out of control, I spiral... hard. To help with this (as far as appointments go) I like to write things down for my next appointment. Write down your thoughts and questions so they don't get lost in your emotions today or when you are with your doctor next. Even if you think a question is silly or unimportant, write it down anyway (extra points if you ask those silly questions too).


Be proactive

After Thursday was over (and I had a big headache from crying, oops) I decided to be proactive (please see above - I hate being out of control) and call the clinical hypnotherapist I was being referred to, instead of waiting for her to call me after hearing from my doctor. There is always something you can do to help, even if that is booking in an appointment with your GP to discuss things further. You've got this!


Seek professional help

Psychologists and counsellors are brilliant! Do yourself a favour and organise to see one or book in to see yours. I actually book mine ahead if I know I will be seeing a specialist at a particular date and don't have an appointment with my psych around that time. I saw my psychologist straight after my neurologist last week and it really helped to debrief with her and get her advice around some upcoming tests. They are so insightful and a wealth of knowledge, I just cannot recommend seeing some sort of mental health professional enough!


Be kind to yourself

Remember that this won't necessarily be your forever. I obviously can't speak for everyone and every situation but often it can seem like temporary situations are going to last for the rest of your life. Stepping back and practising some aggressive self care can be exactly what you need.


Doctors appointments can be hard and, in my opinion, it can be hard to adjust our own expectations especially when our lives seem to be ruled by chronic illness. Be gentle with yourself and remember that you don't have to go through it alone.


Life is tough, but so are you!


Maddy xx

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