Something often over looked with a predominately physical disease like Crohn’s is the psychological effects of the disease and how that can affect a person’s mental health. Coming to terms with a chronic illness is incredibly difficult. Even after almost 5 years I’m still not sure I’m even half way there! It has really only just become apparent to me lately that this isn’t something that is going to go away. That’s the nature of an immune disorder; it progresses, it fights back and it builds an immunity to drugs. So although I’ll be lucky enough to experience periods of remission, I will live through many times such as this where it is taken away from me. So I wanted to explain a little bit about the things that go on aside from physical symptoms to explain how this affects me, and other people you may know or meet with this disease.
Isolation & Friendship
I’ve found coming back to the UK incredibly difficult. Leaving my friends and life in Portugal was tough and now I’ve come back to a town that I never really spent a great deal of time in. While I have a few close childhood friends here, I went to college in a different county and those friends are based all over the country. I’m not yet well enough to be travelling distances or stay away from home, so this often prevents me from reaching out to friends a bit further away. So based in the vicinity of my town live about 2 or 3 (amazing) friends, which is great, and really all I need – until of course everyone goes on holiday. I’m not going to sugar coat it, its been pretty lonely.
Unfortunately my condition is far from stable at the moment, one day I can be sat in a pub garden drinking G&T’s and the next I can be in bed all day, and this means often having to cancel plans, or being worried to actually make plans for fear of them being cancelled and letting someone down. A few weeks ago I actually had to cancel a beach picnic halfway through and ask my best friend to drive me to the hospital as a surgery slot came through for me at the very last minute. Thankfully she’s a super understanding friend and was more than happy to finish off the hummus to herself but I would have found this incredibly embarrassing should I have been with someone I didn’t know as well!
The past 3 months I’ve been in a lot of pain, and this includes it being painful to walk, so any activity with friends that involves anything other than sitting down I have to turn down. Obviously my friends are more than accommodating and often just come over to sit on the sofa with me all day, but I often feel like I’m holding them back, particularly when this weather is so wonderful and everyone else is out enjoying a beach day. This combined with the geographical isolation means I’m relying on the support of my friends close by a lot more than usual and therefore my biggest fear is becoming a burden to them. I know every single one of them would tell me off for even thinking that, let alone saying it, and drop every plan in the world to help me during this tough time, but it is often a fear that I’ve become ‘the sick friend’.
Naturally there is also mental isolation. It’s near impossible to explain how I feel to someone, or to expect them to understand. My friends and family are incredibly compassionate and caring, but facing a diagnosis of a chronic illness is something they will probably and hopefully never have to do, so it’s impossible to expect them to understand how I’m feeling. I’m pretty good at sugar coating everything and smiling away harping on about “making the best of a bad situation” and “staying positive” but sometimes this is honestly just a façade put on to avoid difficult and emotional questions.
Along with this, the nature of Crohn’s disease means its different for everyone and I actually don’t know anyone else with the disease that’s been through the same things as me. I also don’t actually know anyone my age with the disease so I don’t get the opportunity to chat to people in similar situations or stages in life.
Looking or not looking sick
Crohn’s is an invisible illness and a hidden disability. The upside of this is I can often hide how I am really feeling on the inside and try and get on with life. The downside is often feeling the need to validate and explain my sickness. When I see most people they chime along with “Oh but you look so well!” and I realise this is meant in the kindest way possible and meant to reassure me, but I often find myself smiling through gritted teeth and reminding them that’s because human beings don’t wear colons around their necks. I worry that people look at me and think that I can’t possibly be as unwell as I’m claiming as on the outside – I look just fine! I’ve even had this from medical professionals! Most people with Crohn’s loose drastic amounts of weight when they are in a ‘flare up’, but due to the parts of my bowel affected by the disease I luckily don’t have issues with absorbing nutrients, meaning I thankfully avoid this very common symptom. But due to this I again ‘don’t look sick’ and I’ve even had a nurse tell me I couldn’t possibly be in a flare up because I wasn’t skinny enough!
The awareness for hidden disabilities is on the rise, even through the tiny things such as many public places rebranding their signs on disabled toilets. I’ve had plenty of dirty looks and comments over the years for using these facilities, and again felt the need to justify my illness to complete strangers, and equally those complete strangers, through some delusioned authority, have felt compelled to make me do so.
Now this might sound a little premature to be talking about at 20, but never the less its something that plays on my mind. Anyone that knows me knows I’m crazy about kids and stupidly broody in a way that probably terrifies my poor boyfriend. But for someone with Crohn’s, kids mean complications. The medical world can’t yet say if this disease is environmental or genetic and that’s a risk I have to weight up very seriously on a moral level. Can I risk bringing a child into this world if it means I could put them through the same thing I have struggled so much with? I desperately want children of my own one day but is this desire therefore a selfish one? Would taking the risk of bringing an unhealthy child into this world be selfish? Any son or daughter of mine would undoubtedly be as strong as I am – but just because they could cope, doesn’t mean that they should have to.
My fertility will be affected by the medications I’m taking. If I do fall pregnant doctors are unable to say if the medication I’m taking is safe to be taking while pregnant. If I stopped the medicine I would almost certainly go into a full flare up and quite possibly lose the baby.
Due to the nature of my disease affecting some of the lower parts of the bowel, and the way the surgeries have weakend the area mean that a natural birth is dangerous. I would risk rupturing the areas of the bowel made delicate from the surgery, therefore I’ll have to have a C-Section. Don’t get me wrong, this is no less of a birthing process, in fact the recovery looks even tougher than a natural birth, but its the lack of choice that bothered me here – my own autonomy, something that I personally feel makes me quite inherently female taken away from me before I had even considered starting a family. I’ve often mused over that classic movie scene – waters breaking – that 3am dash to the hospital – the mix of excitement and trepidation, and having that taken away before it has even begun is tough. If/when I make it this far, I more than likely won’t be able to breastfeed either, due to the risk of my medication passing through into my milk. Again this isn’t the end of the world, many women choose not to breastfeed, or cannot for various reasons and babies are just as happy and healthy on formula, but as I said before, its more that its one more thing I won’t get a choice over.
So maybe kids don’t look that easy on paper – how about being that cool childless aunt? The lawyer in the city that drives a Porsche on the weekends and goes on holiday four times a year? Well unfortunately two of my last three jobs have come to very abrupt ends due to me having to quit due to illness, and the third job was interrupted by an emergency surgery, leaving work with 15 minutes notice. So naturally a worry I face is whether or not I will be able to hold down a career. High stress environments can set off flare ups and needing months off work if this does happen doesn’t make me sound like the ideal candidate for any job.
And finally… the manifestations of these worries
The fear is that whatever pathway I take, which ever country I settle in, and whatever dream job I manage to achieve it could all be taken away with it at a moments notice, and it probably will, multiple times, and sometimes its hard to stay positive about that. Recently I’ve had to admit that actually no, I’m not really coping, and that’s okay, no-one is okay 100% of the time, and I don’t think anyone in my position would be. These worries and fear manifest themselves in ugly ways. It started with panic attacks: the shaking, the hyperventilating, the feeling of a snake wrapping itself around my chest and tightening with every breath I take in – and what started this episode? I forgot to buy limes.
The point is these mental symptoms of coping with chronic illness don’t actually coincide with thinking about the disease, it’s been one of those things I’ve pushed down and ignored until its found the most bizarre and irrational way to come out. More recently its emerged as more of a internal panic and anxiety. I’m sitting in the physio’s office waiting for my appointment and sense of impending doom sweeps over me. Did I leave the hob on? While we have all had this fear at some point, this doesn’t stop there. Rationally I know I didn’t – I was in the kitchen for an hour after I made breakfast, I would have noticed, and even if I didn’t notice, its an electric hob, with nothing near it, it would be fine. Despite this, within seconds I’m sweating and the whole room starts to spin. I see my home on fire, I realise I’m responsible, my dog is trapped inside. I feel my own being rise up and I’m watching my helpless self sitting in the waiting room. Frozen. By this point, as bizarre as it sounds, I am genuinely and wholeheartedly under the belief I am going to jail. I dig my nails into my forearm in an attempt to bring myself back into reality to find the receptionist looking at me strangely. She’s called my name multiple times and until now I haven’t even noticed. I pull myself together and walk into the physio’s room. This will repeat almost every day, with different irrational fears, in different places but with the same suffocating sense of complete and utter impending doom.
Obviously, this is now something I’ve realised is not right, and is now controlled by just another medication to add to the growing pile. There is nothing unusual about this though, or even particularly worrying about it. The pyschological effects of this disease are always going manifest in some way or another, and perhaps when I finally come to terms with this disease and process and accept my life for what it is, these are symptoms that will disappear.
I’m not trying to write this article for any sympathy whatsoever, I just want to remind everyone that people have a lot more going on than meets the eye. Please look out for your friends, even if they seem okay on the outside, even if they look healthy. If you know someone with Crohn’s or a similar illness, I hope this allows you to understand a little bit more about the less obvious problems they might be facing. And if you have Crohn’s and are feeling similar, you’re not the only one.
Oh and don’t give anyone a dirty look for using a disabled bathroom just cos their legs work – they might just turn around and make it so that yours don’t.