The Importance of Mental Health in Chronic Illness

For most people with a chronic illness, there comes with it a care plan that includes multiple specialists. One of these specialists is a psychologist. This makes complete sense, given the toll it takes on the person, body and mind.

However, I hadn’t really been thinking much about it lately, just going along with the flow. Going to each doctors visit and every specialist like a good little patient, without really thinking about what each of them means in my care plan. I hadn’t received the answers I needed from any of them, so I stopped expecting anything from them, and in turn stopped reaping any benefits.

I just kept going to the appointments, adjusting my medications as instructed, doing whatever else they told me, in a numb like zombie state. I thought I had simply accepted my lack of diagnosis and was going on with life, but really I was avoiding feeling that constant frustration, disappointment and guilt.

With my health condition (which may or may not be Lupus) comes many symptoms and many obstacles – the latest being chronic (almost daily) migraines. Even if I don’t have a full blown migraine, I do have some degree of head pain or malaise. If you have never had a migraine, imagine something that caused you horrible pain… Like menstrual cramps or being kicked in the balls (sorry boys.) Now imagine feeling that pain on varying levels daily… It would become kind of hard to think about anything else, right?

That’s what I realised was happening to me as I sat in front of my psychologist after not having seen her for 3 months. I realised in all my effort to look after my physical health, I had actually forgotten something just as important – my mental health.

Now imagine this – I’m sitting in front of a highly experienced clinical psychologist, with 24 years of experience and a PhD. After approximately 40 minutes of her trying to find out what’s been going on in my life and how I’d been feeling, she actually laughed at how difficult it was to get an answer. She was so stumped that she actually laughed, in a very awkward way. I’d once been told many years ago by a different psychologist that getting information from me was like getting blood from a stone. In this moment, I finally understood her frustration.

Now, let me be clear, I wasn’t intentionally being difficult. I’m a very honest person. If I had known how I’d been feeling lately, I most definitely would have shared it with her. But the thing is, I hadn’t thought about it much. When she asked me how I’d been feeling, the only answer that came to mind was physical pain – which wasn’t actually what she was asking about. But when I tried to think about emotions in regards to any situation we had just been talking about, my mind actually went completely blank!

We did get somewhere in the end, she managed to get one emotion out of me and we managed to get to the root of it. All in the last 5 minutes – proving what a skilled doctor she is! But the entire session did actually highlight one major issue to me, and probably to her. That I was not looking after my mental health in the slightest. I was… I AM, so consumed by my physical health, and in my chronic pain, that I completely overlooked my mental health.

That is an incredible mistake – one I’ve never made before. I was genuinely shocked by this revelation.

This highlighted for me the importance of managing your mental health, even while in the midst of a physical health debacle – ESPECIALLY while in the midst of a physical health debacle. Both physical and mental health go hand in hand, and one most certainly can affect the other.

This brings me briefly to the topic of trauma. One would expect trauma to come in the form of a car accident or abuse – but it can also come in the form of an illness. During or after a trauma, people can experience a kind of ‘numbing’ effect (I don’t know the exact clinical term.) This is something I’ve experienced in the past, so I was deeply surprised that I had slipped up and forgotten to focus on something so important.

This is something that should be remembered not only for those suffering from any kind of chronic illness, but also for their loved ones. There is a VERY good reason why psychology plays a part in our care plans, and it’s not something we should be taking a part in just for the sake of it. If you’re going to look after your health, look after ALL of it. If you’re going to check in on someone suffering from a chronic illness, ask them how they’re feeling emotionally also. It may just be the reminder they need.

“If you gain 3 kilos, all your problems will go away.”

“I truly believe that if you gain 3 kilos, all your problems will go away.”

That’s not something I EVER expected to hear from a doctor. Especially a very experienced professor in Endocrinology, highly recommended by a few of my other specialists. Especially after I had explained in detail over the course of an hour that I had always been this shape and that the rest of my family was the same.

I’ve always been a skinny girl, and trust me, it’s not from lack of trying to gain weight. My diet has consisted of carbs and chocolate since I was a little girl. Pasta, bread, potatoes, bagels, rice, they’re all my favourite things! I’ll choose a burger or a pizza over a salad any day! And yet, here I stand, 172cm and 52 kilos.

Growing up I had several doctors ask me if I eat. And that ALWAYS confused me so much. Of course I eat, what a ridiculous question! In fact, I never stop eating! I graze all day long, and that’s never changed. Though when I look back at photos, I do see why they were concerned at the time. I was VERY thin.

But looking at myself now, I don’t think I look sickly skinny to the point where a doctor would blame all my health issues on a measly 3 kilos!

When my health first took a turn for the worst, I lost 6 kilos. I dropped down from 54 to 48 kilos. It was noticeable to everyone and I often heard people talking about how thin I’d become. But there wasn’t much I could do about that. My GP told me to eat whatever I feel like whenever I feel like it to try put the weight back on until I could yet my appetite back.

And I did. I became a huge fan of cheesecake, and relished in the idea of being able to eat it all day guilt free. And I put 4 kilos back on. Back to an average weight for myself. Awesome! Now if I could gain those extra 2 kilos back, it was really just a bonus, but no biggie for the moment.

So when I finally saw this professor, back at my normal weight, and explained all this, hearing him tell me that all my health issues would go away if I gained an extra 3 kilos brought up a lot of questions for me.

Why 3 kilos? If I’ve always been this weight but been healthy previously, why is my weight an issue now? Are you really allowed to promise me such a thing? Are you dense?

All those questions and more were running through my head. It was absurd to me! And yet, when I got home and mentioned this seemingly crazy doctors prognosis to a few people, they agreed with him.

WTF?!

Suddenly everyone around me was telling to me gain weight and then I’d feel all better, watching what I ate and telling me to eat more. Like I hadn’t spent years trying to gain weight with no success, like I could just force myself to shovel in more food, like my metabolism would just change in an instant. Had everyone lost their god damn minds?! I couldn’t figure out what on earth was going on.

But later on I realised. These people care about me, and saw me go from a healthy and energetic 28 year old, to a sick girl who barely had the energy to go to work, kept ending up in emergency, had shed 6 kilos in no time at all, and suddenly had a whole other list of issues that no one could understand or explain. And they hear me come home and tell them that a doctor gave me an answer, and they clung to it. I understand that.

What I don’t understand is a highly experience professor making false promises to a woman with health issues simply because it would hurt his ego to admit he couldn’t figure out what was going on. What’s more is that it’s dangerous for a someone in his position to ever do that without the relevant tests to back up that claim, and to rule out anything sinister.

Guess what Dr Dense, I went to Fiji and gained those 3 kilos, and not one thing changed (shocker.) If anything, my health has deteriorated in the last year since I’ve seen you.

It truly scares me that he dismissed me so carelessly. How many other people has he done this to? With a reputation like his, I like to hope it’s very few. But with a reputation like his, it makes it all the more dangerous if he was saying this to other people. Other people who might believe him and not look further into their health.

There’s two things I took from that experience. Doctors are human and make mistakes too, and second opinions are not only acceptable, but crucial.