CF AND MENTAL HEALTH

Hay, I want to start by saying I’m very grateful my mental health hasn’t been an issue for me personally, I do have my own problems but after years of building some coping mechanisms. I really didn’t consider them as coping mechanisms more as just solutions I found to how my mind works. I get that’s the same thing, but I didn’t consider them as issues that needed fixing, just things I thought was how my mind worked naturally. Its important not to feel shame about our mental health. My partner struggles and constantly apologises for things she does or acts, but I explain to her that our mental health isn’t our fault. If you have a diagnosis your issues are in the brain, just like any other body part. You wouldn’t judge me for coughing too loud so why would I judge you for your illness. Having Cf I feel I can relate slightly because they both can be considered as invisible illnesses.

Here’s some research I’ve found on the subject  

Mental health among people with any chronic illness, including cystic fibrosis, remains an important part of maintaining long-term health and quality of life. That’s why regular mental health screenings have become a recommended part of treatment for cystic fibrosis (CF) for children ages 12 and older, their caregivers, and adults with CF.

Health outcomes related to untreated depression or anxiety

According to the CF Foundation, people with CF and untreated depression or anxiety have worse health outcomes, including:

• Are less likely to manage their treatment plans

• Tend to have worse lung function and lower body mass index (BMI)

• Face more hospitalizations

• Frequently experience higher health care costs

• Report a lower quality of life

The frequency with which people with CF report depression and anxiety increases in the teen years. It remains high throughout adulthood, especially if additional complications like CF-related diabetes (CFRD), osteoporosis, and liver disease are present.

How common is depression or anxiety in individuals with cystic fibrosis?

The psychological challenges of CF on children, their parents, and adults with CF are well known. A large U.S.-European study recently found that 10% of teens with CF experienced depression, 19% of adults with CF, and 37% of mothers and 31% of fathers. Anxiety was found in 22% of teens with CF, 32% of adults, 48% of mothers and 36% of fathers. These results were two to three times higher than those in the general populace.

The study also found that teens whose parents reported depression or anxiety were more likely to have symptoms of these mental health issues too.

While depression and anxiety are separate conditions, there can be overlap. The CF Foundation found that among people with CF who report either anxiety or depression, 40.2 percent experienced both.

Interestingly, depression and anxiety are experienced equally across all CF genetic mutation classes unlike other complications like liver disease, CFRD, or pancreatitis which seem to be tied to particular mutations.

Personal experiences               

I was first put in touch with my mental health team when I was 12 when they suspected I had an eating disorder. I was due a mental health screening anyway, but they were concerned by my lack of appetite after surgeries. What I explained was I was hungry but having intense surgery on my stomach made it uncomfortable to eat for a few days while I was healing. I apricated their concern, like its nice to be offered help and not need it rather than the other way around.

My next experience was about a year after when I had a morbid curiosity regarding my not seeing 16 life expectancy thing. I wasn’t scared or anxious about the subject, but I was wondering why I grew up with this number in my head but felt fine and healthy. All I was looking for was the figures on what the life expectancy currently was, and could it be avoided if I worked hard enough or new treatments were found. They wouldn’t give me a straight answer for love nor money. Just vague statistics about how CF affects people in general and something along the lines of “you’re young and healthy, don’t worry about”. It was through my own research I found it had increased in general to 32. I get that they probably couldn’t tell a small child that he likely wouldn’t see old age, but the avoidance didn’t fil me with much confidence.

(Side note, it was like the overly nice staff in the cancer building at castle hill. I guess it’s a good insight on my mental health state from what could have been a very traumatic event for me. Basically, in College I would randomly turn Jaundice for a few weeks. Then when I would go to get it looked at it would go. For months I was told it could be an infection, Hepatitis of some kind. I went in for a ultrasound and was told to meet a surgeon to discuss the results. I had never been to that building before and when I arrived, I saw it was the cancer building. I went in and spoke to the woman at the desk who looked shocked when I said I was alone, I was 17 so I was used to attending appointments alone by then. She kept saying things like “Don’t worry, you have us now”, she then showed me to the next woman and left saying this brave guy is by himself, so we’ll look after him. The other receptionist was much the same and my idiot brain was like “wow, these people are really nice”. I was then seated in a waiting room with two other men. I overheard their conversation, and they were discussing how long they was told they had left. “ I was given 8 months” the other replying “same unless the chemo goes well”. It was then it clicked. “Oh shit, do I have Cancer?!”

The strangest part was I wasn’t thinking how long he will say I have left, what do I want to do in that time or how funny should I make the video I want playing at my funeral, nope. All I could think was how the fuck am I going to tell my family. How can I be there for them, how can I let them know in the least upsetting way.   

After what felt like a year, I was called into the doctor’s office. He too was cheerful and seemed quite laid back about everything. He showed me an x-ray image of my liver and pointed to a small stone thing. “This is it; this is what’s been causing the problem” he almost looked like he could laugh. Basically, this little stone had been floating around my liver and every so often would block one to the exits used to get rid of its waste. Then it would just move again, and everything would be back to normal. “Just a minor surgery and you’ll be as good as new.”  

I had to ask, so it’s not cancer? he looked puzzled and said nope just a common stone much like a kidney stone.  “So why am I in the cancer building?” he just said “oh, this is just where my office is”

What a relief, I laugh telling the story now and to this day I’m still weary of hospital staff that are too nice, I expect to see johnny Depp walking around or at my age funeral planners giving me “ a great deal” hahaha.)

Eventually, I did succumb to the usual teen hormones, feeling unwanted by friends after losing touch, not feeling adequate to find a partner (the woman I was talking to in lockdown posted a tiktok about nice guys and how I didn’t respect her decision, that because I was a “nice guy” I was entitled to love. I was saddened by that because I thought she knew me better, that I felt like I wasn’t good enough for her or anyone) I’ve found a better mindset now and I’m proud of who I am. I still have plenty to work on but that’s more a relief at this point because my mind doesn’t do too well when I have no projects to do. I guess it’s around this time I found myself not quite lonely but misunderstood, I haven’t didn’t have anyone that truly seemed like they understood me, that I could truly open up to. I have only found 1 person who at least seemed like she did, but we don’t talk anymore. Luckily, I know wonderful people that can at least connect in some ways. So, all together I am understood, just by around 50 people instead of the one. Which is nice in some ways.  

I guess I should talk about my worst. As said in the relationship section it was after a breakup/ loss of contact. I was told by my Psychologist I was having panic attacks (uncontrollable shacking and intense sinking feeling in my stomach) and was depressed. I didn’t have depression, that’s different. I set of to find a distraction and I did. I did a lot of work etc (I’m written a lot about everything I did) but my body clock was still set to waking up at 5 in the morning and having nothing to do I felt so trapped. I couldn’t just sleep it out or close myself off. I had meds to do, appointments to get to and calories that needed eating. I couldn’t just rest, and my CF was the cause. I wanted to give up so badly just for a little while but if I did the detriments to my health would be a lot worse in the long term. I never considered ending things, but my mind did cross the subject. I can’t and won’t ever do that, it would destroy my family, and after the millions of pounds used to keep me alive, it would be a slap in the face to all those who have saved me just to end it. So, I wanted the next best thing. I wished I had a skip button like in the movie click. I just wanted rid of the constant sinking feeling I had for months and eventually after months it finally started getting better. I would still have the odd bad day or even a bad week or so. But I survived. Oh, and because I know this section can be a bit of a downer here’s a little funny anecdote. That Christmas after losing communication with J my parents didn’t want me to be alone, so they got me a kitten. Kittens did as kittens do and soon, I had arms and a back full of scratches. During a virtual appointment with my psychologist, she explained considering my mental state it was mandatory to ask if I had any thoughts about SH or S. As I replied with “none, I’m all good” I incidentally did my usual chin rub and revealed an arm full of scratches. I burst out laughing and explained it was the cat not me. She too laughed it off saying she saw the kitten earlier, so she believes me. That would have been hard to explain. She also explained that mental health could also be affected by Vitamin D levels and no so coincidentally mine is chronically low.  

Towards the end of them sessions I a few people had joked I’ve got ADHD. I somehow ended up on that side of tiktok and spoke with a few of my friends that have it. I noticed it could have explained so much about how my mind works, from the brain fog, restless legs, difficulty turning my mind off to sleep, and so much more. Including needing visual reminders to do my meds. I had studied psychology myself for years so I was aware that there’s a book of various mental health issues and even those sound of mind could confidently self-diagnose themselves with about 8 of them. It’s the Web MD effect. So, I though to ask her on her opinions. She replied with “as someone that knows you, I find it very likely. But I can’t give you an official diagnosis” she said she could put me in touch with the team if I wished to pursue an official assessment. I feel like I have developed strong “coping skills” but if my sleep gets any worse or it starts to affect my job I may do in the future.   

While it’s kinda on the subject I do have a slight worry about dementia or Alzheimer’s. But while reading a great book called The Man that Mistook his Wife for a Hat, a book that looks at how the human mind can find loopholes or coping mechanisms around serious mental impairment. In the book he writes of some patients with late-stage dementia. They couldn’t remember much of who they were, where they were or what year it was etc, but he explained that when you gave this one woman an instrument, she would play it beautifully. For anyone interested, we all paly instruments, type differently, and even play games differently. I studied this in IT weirdly when a guy had developed a computer security system that would unlock after “playing” a code on a guitar hero guitar. Bear with me this is all relevant, He basically identified this individuality and used it to unlock his computer. Same goes for instruments and as Oliver Sacks wrote in his book it was that skill that seemed to remain even when seemingly everything else has disappeared. He likened this to an existence of a soul, the one remaining trace of “them”. He noticed this in other patients too. So, if I get the chance, I would love to learn the cello, and should anything happen to me I may preserve some of me that way.    

So that’s my story. I like to say that while I’ve written extensively about the dark times of CF and mental health. I still believe that the majority of Cf patients, myself included have a heightened appreciation for life and living to the fullest. We can see the light in even the darkest of times.  

If anyone is reading this that feel their mental health isn’t the best there’s no shame about asking for help or, if you’re like me and things don’t seem right but aren’t anywhere near to the point you think you need help, try speaking to someone anyway to be on the safe side. Who knows you could just need more vitamins haha.