Trigger warning: This post references studies on anxiety, depression and suicide.
A while ago, I opened up a little bit more about my life living with Crohn’s Disease and anxiety. I have already talked about life living with Crohn’s Disease and anxiety but I made a short video about the key facts around IBD and anxiety; and spoke at length about my ongoing journey with health anxiety in particular. (which you can watch below-Should you wish to know exactly what my Birmingham accent sounds like, here is your chance!)
However, after making it; I felt as if it was only the tip of the iceberg. I had talked about my anxiety developing in the months and years after being diagnosed, but what if more help could have been given beforehand?
It got me thinking about my own experience when diagnosed. Even though it was at a private hospital (as I was living abroad), I was given many leaflets, told about the side-effects of a medication I would start and left with a bundle of prescriptions. It might have been a private room and a fancier hospital gown, but still, nobody talked about how I was coping and the huge impact this would have on my life mentally.
Mental health+IBD: The facts
As always, I like the begin with some facts. The two I addressed in the above video were…
- Having Crohn’s disease means you’re 50% more likely to develop anxiety.
- There is a disparity between how we perceive our condition and our doctors. 40% of doctors treating a group of patients felt that their symptoms prevented them from a normal life-but more than 60% of those same patients did.
In 2013, it was reported only 24% of departments treating IBD had direct access to psychological care (source)
TRIGGER WARNING: SUICIDE… (Please be mindful)
After publishing my video, a psychotherapist who specialises in IBD (Tamara from Gut Feeling) got in touch and shared some information specifically with me about suicide and IBD. I don’t want to go into this at length as I know this can be triggering, but I feel it is something that is incredibly important to talk about in relation to why counselling needs to be offered.
One study concluded: “Suicidal thoughts and behaviours are common among adolescents and young adults with chronic illness, particularly among those with comorbid mood disorders. Health professionals should routinely ask about STB during assessments of their adolescent and young adult patients.” Whilst a Danish study suggested an increased rate of suicide amongst both UC and CD patients (here):
That should give some gravity as to what we are talking about here!
Your Experiences of Being Newly Diagnosed with IBD
I REALLY don’t want this post to be ‘about me.’ Like I mentioned in the video, I completely appreciate that I was in a position to afford to pay for CBT but also that my mental health experiences aren’t as severe as others.
I asked some of my readers to share whether it was just me-and whether they were offered any mental health support when diagnosed. Here’s what they said:
Michael: I was diagnosed at 8 years old, and desperately needed some form of counselling. I received none as at the time they just didn’t connect the two in 1994, much less knew what the hell it was. I was constantly told I was wise beyond my years, but considering what I went through, and how my family was having such a terrible time at the time on their own, needless to say, I got some trauma that haunts me. Mainly me thinking everything is my fault.
Samantha: There is a huge disconnect. When I had my ileostomy, the surgeon insisted I tell him I’d be happy with my decision and not mad at him before he’d do it. When I was diagnosed with breast cancer, I told them I was finding the experience traumatic- they didn’t just ignore my statement, it was clear they had no interest in treating it or even acknowledging it. PTSD is apparently a long-term consequence of chronic illness.When people aren’t well fed, don’t sleep, and are mediated – by some definitions, that would be torture, yet people who are sick are in that state and expected to make quality decisions about their care. Who can be right of mind/good emotional state under those conditions?
Anonymous: My team asked me if I wanted counselling before this pending surgery and I said yes but that was 3 months ago…. nothing has surfaced yet and it’s never been mentioned since. I don’t think surgeons or gastros get it as well or understand the trauma our bodies go through. Yes surgery and meds makes us well, yes our conscious mind logically agree, but it doesn’t mean our body and our subconscious mind just accepts it.
Sharon: Where to start about my initial diagnosis! being told I was doing it (being ill) to seek attention
My parents reading a 30 year out of date Encyclopedia that said regional ileitis (old term for Crohns) was psychosomatic
My GP saying you probably have colitis – there’s no cure for it so when I left the surgery I felt so ill i seriously considered suicide. It was 1980 so I am sure it’s not as bad these days. Online sources are a huge benefit now
Angela: No, I received none, and with hindsight, I think it would have definitely help me come to terms with it quicker. I literally thought I’d just been told at 22 that I was going to die and if I didn’t die, I was certainly going to have no ‘life’ and probably quite a miserable existence with a bag for company. Information was very limited and there was no Dr Google back then. (Good thing/bad thing?!)
Anna: There was no such thing as mental health when I was diagnosed. You were supposed to just get on with it. This, and the fact it took years to get a diagnosis, scarred me mentally. I had what was then referred to as a nervous breakdown and had Valium was given to me, which made things worse. Somehow, with the help of family and friends, I managed to get over it.But – ever since I have had episodes of crippling anxiety. I have now been diagnosed with Generalised Anxiety Disorder. Periodic CBT which doesn’t help. There is no effective treatment for mental health problems for people in our situation. No-one knows either who should be responsible for it! IBD nurses, doctor’s, GPs or mental health professionals!
Kelly: When I had my colonoscopy and was left traumatised because I was not expecting it to be so painful. I just wanted someone to talk to. When I rang the hospital I got snapped at and said do you want to complain. I said no I just want to know if it was normal for it to be so painful
Clare: 18months ago when I was in the middle of a significant flare I hit rock bottom emotionally & mentally. It was my support networks (family & friends) who supported me through this. Perhaps I didn’t ask for support from professionals because I was scared “stress or anxiety” known to my employers would impact my job! This is scary in itself that people are scared to ask for support & even if they did ask, may not receive it.
Should everyone with IBD be offered counselling?
I know that ‘counselling for all!’ is a simplistic (and bloody expensive!) approach to the matter. Indeed, not everyone would feel comfortable with this- some might choose to ‘get on with it’ and others might not be in a position to talk about it until much later on. One of my readers Sophie pointed out: “I feel like I would have declined (counselling) at the point of diagnosis, but 2 years on almost to the day I feel I would definitely benefit. I think it’s definitely a great idea to offer it, but I would have been too pigheaded to accept until I’d learnt the hard way that it’s not just a case of some steroids and Azathioprine and all better again.”
So actually, part of the issue is just making mental health part of the conversations altogether; and our doctors acknowledging that there will be some ups and downs on a journey rather than it being a simple solution. Mentioning support groups, talking therapies, online tools and acknowledging the risk of mental health issues during our FIRST appointments could make a huge difference: even it’s something that people don’t actually turn to until later on.
There are many other resources patients could be introduced to when diagnosed; such as online CBT tools, books on prescription or buddy schemes. Either way, I think this post demonstrates just how problematic things can get it if it’s not mentioned at all.
- If seeking private counselling, check they are accredited with the BABCP (British Association of Behavioural and Cognitive Therapists) if undertaking CBT or other accreditated bodies listed here for other types of therapy.
- A list of free books on prescription (even if you pay prescription charges, these are free) about mental health.
- The NHS has a list of approved apps for mental health(I’ve just discovered this page and off to download!)
- My blog post – 8 support networks for those with IBD’
I do hope you found this post useful -I’d love to hear your thoughts? Do you agree with me? Do you think mental health and IBD are extrinsically linked? Would you have liked to have been offered counselling when diagnosed?