Fibrosis File

Charlene Marshall writes a column for Pulmonary Fibrosis News (www.pulmonary fibrosis.com) titled “Under 30 Living with PF”.

She recently expressed her frustrations about not being able to answer the ques- tions she is often asked, What do you need? How can I help? Sometimes she simply does not know what she needs. Charlene decided to gently remind family, friends and care givers who have a loved one dealing with a chronic illness, what they don’t need.

Putting expectations on us. I know that I used to be more helpful with a number of things for others, but given my fatigue and limited energy, I can’t keep up anymore. Please don’t expect me to be present at social events or to go from one activity to another without resting. Please don’t expect me to take on your emotions around my illness. Being supportive of my friends used to be something I was proud of and I always offered to help and wanted to listen and be there for them. Lately, and I wish this weren’t the case, I am grappling with my own emotions. And as much as I wish I could take on things for others, I just can’t.

Placing blame on my past choices. Some- times I need my friends and family to be there for me when I just need to vent. I don’t need you to offer me a solution, nor do I need you to blame my choices. I am just asking you to listen to me, not resolve things for me, I would really appreciate you not placing blame. I am doing the very best I can right now.

Dismissing me when I need to talk. Believe it or not, this certainly has happened with family members, and while I don’t expect you to drop everything to support me when I need you, I am hopeful that we can set aside a time to talk if you are busy when I reach out. When you want to be supportive, this is one of the biggest ways you can be: Please just listen to me when I need to talk. I am not always looking for an answer; sometimes I just need an ear or a shoulder to cry on.

I know supporting someone with a chronic illness that is life-threatening is not always pleasant. I know that it can be incredibly frustrating, especially when you can’t do anything about the fact that we have been diagnosed with a disease. Believe me, we feel these things as much as you do, and often we feel things more because we have the disease, symptoms and medication side effects to go with the feelings. That said, please accept this gentle reminder about the things we don’t need from you.

The things I’ve listed amplify our guilt and make us feel worse. You have every right to vent to others about these things

and you should have a support system of your own. So, when you ask about what you can do to help, I may not have an an- swer about what I need, but please keep in mind these are things I do not need.

I have experienced a whirlwind of emotions, good and bad, since being diagnosed with IPF. Sometimes I feel these emotions randomly, and other times they are attributed to how my day has gone overall.

My friends have mastered supporting me with their ability to not need to understand what’s wrong, and still be present with me as I work through all the emotions associ- ated with living with IPF. And – I think this has been the most precious gift of all – to not need an answer to “what’s wrong” when I am feeling sad. They have come to accept and understand that often I don’t know what is wrong. When I shrug my shoulders through tears when they ask if I am okay, they usually know I am not okay and they remain present anyway.

I think this is something that has taken them a little while to learn, even though I am unable to understand why I might feel upset or sad. However, for me this has been invaluable. I chose to write this in hopes of helping others who are caregiving for someone with IPF. Your presence makes the world of difference, and being patient with our emotions is one of the best ways you can help us. Sometimes I just don’t have an answer for how I am feeling, and I have come to accept that that is okay.

In the News

InspiRx, Inc. has begun a pre-clinical program for the treatment of pulmonary fibrosis with its licensed drug, aerosolized interferon gamma.

Scientists at the University of Pennsyl- vania identified two populations of lung cells that may play a distinct role in such diseases as pulmonary fibrosis – one seems to protect against disease and the other possibly promoting it when things go awry. Results suggest that future therapies targeting each cell type may boost lung re- generation while preventing the formation of fibrotic tissue.

Boehringer Ingelheim has launched a new web site for people living with IPF at www. lifewithipf.com where you can download e-books, guides and watch videos about IPF. They also want physicians to be better equipped to recognize the unique sounds the lungs of someone who has IPF make in hopes of a making an early diagnosis. This is found at www.ipfsounds.org

 

 

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