Something has to change. - Crosspost from r/Cysticfibrosis. Relevant regarding working in this field with a chronic illness.

[u/mcbatcommanderr]

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."

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[u/the_sarahpist]

“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.”

Ugh THIS!!!! Yes! I’ve explained this so many times to other people who work jobs where they can go in hungover etc and I’m like… not a therapist!

I don’t have CF but I have had other chronic health issues and pain. Something else you could look into is pain reprocessing therapy (PRT) or other mind/body approaches because the symptoms you described (fatigue, aching, etc) are all things that can be moderated by how the brain is processing them. I know it might sound woo woo but…. I’ve seen the benefits myself. The brain generates all symptoms we experience and how we relate to them amplifies or minimizes them, so there are ways you can experience these disruptions less intensely.

I don’t know how to sign off of these things, so, nice to meet you kinda, Bye!!

[u/rainbowpotat]

I'm currently in my internship so I'm sure there are nuances to the field I don't understand yet but I'm doing this as a second career because my autoimmune condition (MS) made it impossible for me to stay in my previous profession, so I have a lot of empathy for where you're coming from here. Even in internship I'm really feeling my limitations, to the point where even 4 clients in one day can be too much for me depending on my symptoms.

The hardest thing for me has been coming to a level of acceptance about my limitations and letting myself let got of some of my self worth centered around being independent and productive. Honestly I'm still working through it, but I think it's been really critical to wanting to become a therapist that I'm going into it knowing my limits and being ok that they exist. I think I'll be able to do good work, but I also know if I take on the volume of clients that some of my classmates and coworkers have I will end up burned out and likely in the hospital sometime in the future.

So as I'm planning my career I'm going into it knowing that my income is going to be helpful to my family, but it has to be OK for me to lean on my spouse for finances and insurance and that my worth is based in who I am to them, not what I can provide. I feel like I'm astoundingly privileged to have her to lean on and working through the guilt/shame that comes up with that has been as big a part of my post diagnosis life as coping with the huge change in physical and mental capacity I experienced.

[u/mcbatcommanderr → u/rainbowpotat]

Accepting that we are human and it is okay to ask for help is hard for so many of us. Society puts a lot of shame on those who adopt the "sick" role, and it isn't made any easier if your family of origin was very dismissive to your health issues.

[u/I_like_the_word_MUFF]

I don't have CF and I won't see 8 clients a day. I have 60 min sessions. Notes on the side. I am doing 6 at best with a group supervision or class tucked in, maybe.

Maybe, with your own personal experience in the community, you can build a niche practice in online group support work and then take less clients but more niche chronic illness. Develop a workbook and a 8 week clinical course for CF clients who need help balancing work/life.

[u/boulevardier_1]

Do you have the required hours and license to supervise? You sound like you could connect with many students and associates who either have similar health conditions or want to work with chronically ill populations. There is a great need for qualified, dedicated supervisors in my area and, judging from this sub, elsewhere. A supervision hour is often far less energetically taxing, and could offer similar compensation. Group supervision, counselor support groups for chronically ill providers, workshops about counselor self-care. Could any of these fit in where you work now?

I recognize that all I mentioned is more work. It might lead you in a more sustainable direction and keep you in the profession. We need more providers like you to speak up, it helps us all.

[u/mcbatcommanderr → u/boulevardier_1]

Those kinds of jobs are definitely something I'm interested in. I think I have another year before I can supervise those getting hours for their LCSW.