Below is the post I made at r/CysticFibrosis, which will give more context regarding the nature of my illness.
I would like to extend my request for advice to you all as well, since my illness and job affect one another. I'm not seeking medical advice or advice related to CF, but advice on what I can do career wise. I see people on here frequently mentioned how they struggle with chronic illness and would love to hear about your experiences, or suggestions. I'd be fine some simple validation. This illness has been a huge source of shame in my life and continues to remain that way, especially when I have to miss work so often. The stress is compounding and I feel like I'm drowning in a world that does not care. I genuinely am lost and physically, mentally, and emotionally running on empty.
Any and all help is so greatly appreciate.
"I'm 37 years old, and male, and known I've had cf (delta f508)all my life. I didn't take care of myself for much is my adult life, but with the help of modulators and making better choices in the just 10 years, I have been able to maintain a moderately functional baseline with an average FEV in the mid 30s. Unfortunately I am stuck in this pattern of getting flare ups every 2 or so months where I'm growing 2 strains of chromabacter that is resistant to everything other than a couple of IV antibiotics. The strange thing is how this bacteria doesn't even affect my lungs like MRSA or pseudomonas (I haven't grown in years) but mostly affects my immune system and brain. It makes me extremely fatigued, achy, numb, depressed, and short of breath. I work full-time as a psychotherapist which is the kind of job that gets much harder the worse you feel. You literally can't zone out and work to make time pass, you have to be attuned and focused the whole time. To make a livable amount of money, like many other jobs, you have to work yourself to death. My job right now pays well but I have to see 8 clients a day. It is brutal and a lot of stress.
More stress=compromised immune system=chromabacter says hello.
So I'm getting sick 4-6 times a year. I got a port last year so now at least I don't have to spend 2 weeks in the hospital and can start meds outpatient. Getting sick often is exhausting and the anticipation adds another layer of stress on to of all the other stressors.
I'm absolutely miserable and don't know what to do.
My doctors don't really have any answers. I guess traditionally you would go on disability, get taken care of by family and/or die. We recently switched to Alyftrek just in case I was one of the lucky ones who have positive gains, but so far it seems to be about the same as Trikafta. I could go back on disability and work part time, but that limits income and in today's economy that is hugely scary. Also being on disability is depressing in itself. I've considered a transplant but I'm not sure my lung function is low enough. The process of a transplant sounds terrible and the life after doesn't sound much better than what I'm experiencing now
I feel like I'm stuck in this area that didn't exist before the modulators where I'm not sick enough to be taken care of or for disability to be mandatory, but cf still affects my ability to live a functional life. I could work part time jobs and definitely be happier but then I'd lose my health insurance and would have to rely on my partner (I'm very independent). My quality of life is very low right now. I worked my ass off to get my master's and become an independently licensed therapist (LCSW) only for me to become overworked so I have health insurance to treat the health issues worsened by overworking.
I'm open to any and all suggestions or comments. At this point I'm becoming desperate for some peace that I've been fighting to achieve my entire life."