I’m Taking Medical Leave to Prioritize My Mental Health
I have always advocated for good mental health and promoted the importance of self-care. I preach regularly about this to friends, family, colleagues, and other patients with idiopathic pulmonary fibrosis (IPF).
Since being diagnosed with this life-threatening lung disease, my physical health has been a priority. I do everything possible to protect and preserve my lung function. However, this week, I made the difficult decision to prioritize my mental health instead of my physical health.
I have been privileged to work as a columnist with Bionews Services, the parent company of this website, for nearly four years, and as a forums moderator for more than two years. I’ve met many incredible people in the pulmonary fibrosis community and have been told that sharing my journey with IPF as a columnist has helped others around the world. Supporting others who are on a similar health journey motivates and inspires me.
At my other job, I recently asked for medical leave to focus on my mental health for the first time in my career, and my doctor asked what I planned to do to make me happy. I responded that I would focus on my PF projects.
I did not make this decision lightly, although I’d been talking about it for years due to stress and fatigue. Previously, I wasn’t brave enough to take that step.
Previous medical leaves had followed a health crisis, when I’d had a setback or required surgery. However, I started to notice changes in myself that were red flags indicating my mental health was suffering as a result of chaos at work. To my knowledge, I’ve never dealt with anxiety or depression, and I don’t think I am facing them now. Rather, I believe I have burnout.
As many readers know, I enjoy doing home décor and crafting projects, which occupies my hands and mind when my body is too tired to do anything else. I also love Christmas, and I start making handmade Christmas cards early in the year. When a holiday catalog I usually eagerly await each year was issued last week, and I had no interest in reading it. To me, that was a sign that I haven’t been myself lately.
Despite the tears and feelings of guilt, I decided I needed time away from work to focus on myself. My doctor encouraged me to “dabble” in things that make me happy. So, following are things I look forward to prioritizing in coming months while on medical leave:
Sleeping more: The U.S. Centers for Disease Control and Prevention said that 1 in 3 adults don’t get enough sleep. Lately, that’s been true for me. Sleep is beneficial for patients with IPF. But with so much on my plate, I couldn’t turn my brain off to fall asleep at night. Letting some tasks go hopefully will help me fall asleep faster and have better sleep quality.
Focusing on a better diet: Generally speaking, I make healthy food choices, except when I am too tired to cook. This has been happening a lot lately. With less required of me at work, I hope to spend more time in the kitchen preparing healthy and nutritious meals.
Walking my dog: While days are now hot in Canada, evenings cool down to a pleasant temperature, usually with a nice breeze. This makes it easier to walk my dog, which I plan to do as often as I can.
Focus on PF projects: Having time to do this is what most excites me, and I have several projects in progress. Many focus on advocacy, but some directly affect patients. I look forward to more quality time to invest in them.
While the financial consequences of taking medical leave are concerning, the benefits exceed the concerns right now. This is especially true when I consider that I had been compromising my mental health to stay on top of everything.
How do you prioritize your mental health as a patient with IPF/PF? Please share in the comments below.
***
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Marylyn
Wishing you all the best Charlene. Thank you for your dedication to lifting our spirits through your experience. Marylyn x
Charlene Marshall
Hi Marylyn,
Thank you so much for reading my column and for your kind words! I hope I was clear enough in the column that I will still be writing for PF News and moderating the forums; I feel very privileged and lucky to do that and interact with amazing patients all over the world living with this disease. In my full-time career, I support children and families and my caseload is very large so it is that role I am taking a break from. I love working with the IPF/PF community! Thank you for your kind words, and I am still here... feel free to write anytime. Hugs!
Charlene.
Peggy Kibler
Oh Charlene - I pray for your total wellness in all areas of your life! This must have been a very difficult decision for you, with so much of yourself invested in this forum. It has been hugely beneficial for me, as one newly diagnosed with IPF, to learn from others how their lives have been affected by this disease and how they have worked through some of the difficulties it has caused them. I will be seeing my pulmonologist this afternoon to discuss the results of my recent PFT.
Thank you so very much!!
Charlene Marshall
Hi Peggy,
Thank you so much for reading my columns and reaching out via the comments. I really appreciate your kind words, and am thankful for your prayers and well-wishes. You're right, this was a very difficult decision and I hope I was clear enough in my column that I will still be writing for PF News and moderating the forum during this time. The medical leave I'm taking is from my career role, where I support children and families, and I do this on top of various PF roles I am lucky to hold so I want to step back from my career for a bit and focus on the positions/projects I am working on for the PF community. I am so glad to hear the forums have been helpful for you Peggy, thank you for sharing that! If you ever want to connect, please don't hesitate, I am always here. I remember the difficult days and weeks that followed my diagnosis, so I hope you're being gentle with yourself and wishing you the best at your appointment this afternoon with your Pulmonologist. If you do think of it, let me know how it goes :) Thank you again for writing and keep in touch!
Char.
M C Butler
Dear Charlene
Thank you for your upbeat attitude to IPF. I always find your column so encouraging. I live alone although I have a daughter in the same town, but hate to talk to her about the ghastly symptoms constantly. I have a lovely carer twice a day, but still find the hours are long and empty. My energy is rock bottom and I find any activity exhausting, Howdo you keep active and busy.......must be my age (85). Sorry this is such a moan and how heroic of you to listen and answer people’s worries. Mainly to thank you, your column is much appreciated.
All best wishes
Marlene
Charlene Marshall
Hi Marlene,
Thank you so much for reading my columns and reaching out via the comments. I really appreciate your kind words! To know that my column helps others is very encouraging, and I am always happy to correspond with other patients, though I wish none of us had to deal with this cruel disease. I can imagine the hours feel long and empty Marlene, this is how I felt too before I re-discovered some quiet hobbies like card-making, crafting and writing about my experience with IPF (these take very little physical energy, which is nice). Do you enjoy any of those hobbies? I find it helps pass the time, along with a good book! I'm glad you have your daughter and carer to check in, and know that you can connect anytime. Hang in there and stay safe!
Sending you my best,
Charlene.
Holly W Patient
Good for you for recognizing the need to take care of your mental health, and acting on it. Reflec ting on my own experience with IPF, my long hospitalization and transplant, I do feel that the psychological and emotional aspects are somewhat ignored. Yes, there are resources,but sometimes the last thing we feel like is another appointment, another website, another questionnaire.
Taking time off from an emotionally stressful job sounds very reasonable. Getting good sleep--ditto! I have read that insomnia plagues many IPF patients, and I still deal with it post- transplant.
The isolation caused by Covid restrictions exacerbates the stress that IPF and transplant folks already experience.
This is a tough time!
Take care,rest up,give your dog a pat for me.
Charlene Marshall
Hi Holly,
Thanks so much for writing and for your kind, encouraging words... as always, I appreciate hearing from you! It was difficult to act on what I needed, but I noticed some real differences in how I was thinking and feeling, and knew I needed to do something. You're right re: the additional resources we "need" when feeling unwell, sometimes I think i just need time alone, to recoup, re-energize and sleep, rather than more assessments. It's been tough, but time away from my stressful job will be good for both my physical and mental health. So sorry to hear about your insomnia, that's so tough - is it from medications do you think, or trauma? COVID certainly makes things worse. Thanks for reaching out, I really appreciate hearing from you.
Char.
Kristan Higgins
It's so hard to make this kind of choice, but so necessary. You can't help others if you're not doing okay yourself. Hang tough, Char!
Charlene Marshall
Hi Kristan,
So nice to hear from you (as always!) thanks for reaching out and reading this column. It was a very difficult decision to make, but one I really needed to do... I just want to get feeling well enough again as some confirmation it was the right decision. I appreciate your comment and kind words!
Sincerely,
Char.
Dennis Rowe
Charlene,
Wishing you the best as you continue your quest to get your health back!
As you may remember, I’m an IPF survivor and have benefited greatly from your columns!
Hang in there! I know you will!
Dennis
Charlene Marshall
Hi Dennis,
I do remember - it's so nice to hear from you, thanks for reading and reaching out. I really appreciate your kind words, and well-wishes on my quest to get back to feeling well. I really appreciate it! Hang in there as well, and thanks for connecting :)
Charlene.
Frank Rugani
I am an 80 year old retired dentist. I was was diagnosed with IPF 8 months ago. Wad on 100 mg. OFEV for 4 months with no side effects. I have been on the 150 mg. for 3 months. Your column is very helpful. I have had problems with diarrhea since being on the 150s. The suggestion someone mentioned about taking a half dose of Imodium daily has helped. I had tried the BRAT diet helpful, too. I still don't need Oxygen, but my shortness of breath is rather stable. After the present pandemic is solved, I hope to visit family in Italy and England. I have been told I need clearance from the treatment center before flying anywhere. I consider myself fortunate that my Dx was detected early, as I am a Heart patient with a quad bypass and pace maker.
Charlene Marshall
Hi Frank,
Thanks so much for reading my columns and reaching out via the comments. I'm glad you found a helpful solution for the terrible side effects of OFEV, I know they're tough and glad the Imodium (half tab) helped. I hope you're able to remain off oxygen for a long while yet, and that your plan to visit family overseas can occur soon. I love to travel and can't wait to get back to it after this pandemic. Stay well and thanks for reaching out.
Char.
Raymond
I’ve been officially diagnosed for 2 years, although symptomatic for a few years prior. This site, and your encouragement, have been very important to me. I would now encourage you to not allow this necessary move to lead you to become too uninvolved. But I love the Psalm, “Be still and know that I am God.” Just step back, regroup, and then move forward. God bless.
Charlene Marshall
Hi Raymond,
Thank you so much for reading my columns and reaching out via the comments. I really appreciate your kind words, especially the Psalm... it is exactly what I needed to hear right now. I am hopeful that my stillness I'm seeking from my time off will help regroup, focus and move forward. Being able to interact and support the PF community (in whatever capacity that looks like) is so important to me. Thank you for your kind words; they really helped me today. Stay well.
Charlene.
barbara mathis
Dear Charlene, Please take care of yourself. Your articles and concern for other IPF patients has been so valuable. We will miss you, but understand that your health, mental and physical, is a priority. Thanks so very much for your column contributions.
Barbara Mathis
Charlene Marshall
Hi Barbara,
Thank you so much for reading my columns and reaching out via the comments. In hindsight, I think I needed to be more clear with my column as I will continue to write for PF News and co-moderate the forums :) I decided to take time away from my full-time career job, and consider this additional role (as writer, moderator) to be a privilege and I love interacting with other patients. Please feel free to connect any time, and thank you so much for your kind words!
Char.
Herb C
Hi Charlene,
I really appreciate your input and you being a moderator of the PF News Digest. I was diagnosed with IPF 4 years ago and can appreciate the mental effect a job can have on your health. As a business owner I too recently took a step back from my company to focus on my physical and mental health. Specifically, concentrating on my diet, sleeping and controlling my level of anxiety about contracting the COVID-19 virus which is escalating here at my location in the United States.
Charlene, I hope your medical leave from your job affords you the opportunity to focus on those pursuits that are important for your well being. Again, thank you for your wonderful insight and commentary for this wonderful PF Digest. It's been insightful and very informative as I continue to live with IPF.
Charlene Marshall
Hi Herb,
Thank you so much for reading my columns and reaching out via the comments. Sorry to hear of your diagnosis 4 years ago as well, we're on a similar timeline but the sounds of it, but do really appreciate your comments and kind words. It is so tough to make the decision to step back and take some time off, isn't it? It was one that was really hard for me but necessary and Im hoping it helps. Like you, I need to focus on my mental health and improving my sleep. I hope your time away helps you as well Herb, I will still be writing for the forums and contributing columns for publication through PF News as I don't consider this "work", it's truly a privilege to help other patients on their similar disease course. Please reach out any time and stay safe!
Charlene.
Steven Dragoo
Dear friend - I know your mental struggles and can identify with them.
But you made me laugh when you mentioned you do your handmade Christmas cards early in the year. I used to joke with my mom when you was still alive that she was done shopping for us by May. Well, I wasn't far off. Mom visited us one year for the 4th of July and the day she left for home (2 states away) we received a thank you card for the good time they had. - SHe must of mailed it before she left home to visit us. But the card was in a box and the box contained our Christmas presents 5 months away. Hahaha.
That was over 30 years ago and I still laugh over it...
Stay well and better. - Steve
Charlene Marshall
Hi Steve,
Thanks so much for reading my columns and reaching out via the comments, as always, it is great to hear from you! Yes, the mental struggles of this disease are just as bad (or arguably worse) than the physical at times. I've decided I need to prioritize what I need mentally in addition to caring for my lungs physically, so some time off will do me well. Sorry to hear you can resonate with my struggles too.
Thanks for sharing the story of your Mom - timely with it being 4th of July yesterday :) Glad that story gave you a laugh!
Stay well,
Charlene.
Steven Dragoo
Hey Friend - well in my old age it took a while but I remembered the story more accurately. - They visited on the 4th and brought us a sealed box. After they left we opened the box and found a thank you card for a good time (plus Christmas presents and some cookies). Mom had to write the card before she left here home...
Hope you will mend physically. Remember the hot lemon water and good music in the AM to help start your day...
Steve
Charlene Marshall
Hello my friend,
As always, so nice to hear from you! Thanks for reading my column and reaching out via the comments. So lovely that your Mom did that, such a proactive and thoughtful gesture... I would have liked her I bet :) I've been enjoying the hot lemon water to start my day, its become a soothing part of my morning. Hope you stay well! :)
Char.
Piet Potgieter
You are a star, Charlene and help us all to focus.
Hope your change of course is beneficial and good luck to you.
Charlene Marshall
Hi Piet,
Thank you so much for reading my columns and connecting -- as always, it is great to hear from you! How are you doing?
Thank you so much for your kind words! It truly is such a privilege to be able to connect with patients and share our journey - while I never would wish this upon anyone, we're so much stronger when we support one another and work together. Your comments really mean a lot to me, thank you.
Hugs to you.
Char.
Gail size
Charlene, I will miss your And your column, I always felt more calm and confident to face the the next day. I was diagnosed in 2016, and just like everyone else, it was a long journey to a diagnose. Taking care of ourselves should be our only job, however, just like you, that is very difficult to do because helping others is our passion and keeps us moving forward. Please rest and recharge yourself so you can come back to us soon.
Charlene Marshall
Hi Gail,
Thank you so much for reading my columns and for your kind words. It is so nice to hear from you, and that my columns provide you with some calmness and comfort, that really means a lot to me, thank you for sharing. I was also diagnosed in 2016! Helping others is indeed our passion, and while I wish I was never plagued with this cruel disease (that none of us were), I am glad there is support out there for all of us through platforms like the forum, columns, etc. I was able to take some time off June - August and am feeling a lot more like myself! :)
Thank you again!
Sincerely,
Charlene.
Denise Traynom
I am the caregiver for my mother who was diagnosed in early 2018 while it took me all of 2017 to convince her that her cough was not normal. I've been taking her to Barnes Jewish in St Louis every couple months. In July they told her that her IPF has caused her to develop Superior Vena Cava Syndrome. Then in September they told her that she had the worst case scenario of esophageal dysplasia that there is. It just seems to me that she is going down faster and faster. She is 77 and works part-time (12hours/week) at our church basically just answering the phone. At home she barely has strength to walk from one room to another. All of our family won't come visit her because they don't want to give her covid. Honestly, at this point, I think it is worth the risk. It is absolutely killing me watching her go down and she wants to see her family that is scattered all over the state. She is losing all strength in her legs and arms. She got in the floor last night and couldn't get up. I couldn't lift her. It took us a while but she got up. I don't know........I just have no one to talk to as a caregiver (which I think I'm terrible at). I was on the verge of a nervous breakdown a few weeks ago and at the insistence of my grown kids I went to talk to a therapist which was a waste of time and money. I hate this disease. My Mom never smoked nor did my Dad. Both were always very healthy. My day job is very stressful and I feel just like walking out sometimes because I can't handle all this and I know it's only going to get worse. Sorry, I know I should have probably put this on another thread but had to let this out. Anyone know of any support groups for IPF caregivers that happen to be the patient's child. Like I said, Mom is 77 and I turned 60 this summer. I'm hurting. I'm tired. I'm sad. I'm stressed. and it is killing me to watch my Mother, the best mother ever, begin to progress faster and faster. My prayers are for all who suffer from IPF and their families.
Charlene Marshall
Hi Denise,
Thanks so much for reading my columns and reaching out via the comments. That said, so sorry you're having to deal with the declining health of your Mother as her caregiver, and the terrifying risk of covid-19. As a patient myself, I certainly share that fear. Might it be worth talking to her doctor(s) about risk vs. benefit, in terms of seeing her family and how that might help with her mental/emotional health? I hate this disease too, it's so unfair! Just a thought: you're most welcome to join our PF forums (http://pulmonaryfibrosisnews.com/forums/) .. there are some amazing caregivers on that platform, who might really be able to help you as they truly understand the role and how difficult this disease is. Know that you aren't alone, and please don't ever feel like you have to apologize for venting. The forums platform is good for caregivers to connect, but I'd be happy to share a few other really good ones too! Let me know if that would be helpful, I just don't want to overwhelm. Feel free to write anytime!
Sincerely,
Char.