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Rare Disease Patients: We’re in This Together
Something I have said a million times in response to questions in the forums is, “each PF journey is so unique it’s hard to say…” I know how frustrating that must be to hear, but it’s true. This disease, and all of its cousins–hello, to all of the other interstitial lung diseases, pneumonia, pneumonitis, long COVID, and so on–take course differently in different people. Each path through this diagnosis is completely unique. It’s nice to be able to connect on certain points, and yes, many of our forum users find people with things in common. It’s a beautiful thing when community forms and support is offered to everyone, no matter what stage they are in with their illness.
But what happens when, in our own hurt and grief, we exclude others? Whether on purpose or by accident, this can happen when we feel like we have been a long-suffering member of the rare disease world. We have seen some sh*t, and it might be hard to welcome someone into the circle who’s just been diagnosed. Columnist Ann Reynoso has admitted that she’s had trouble feeling like she belongs in this community because she has an even rarer diagnosis than our familiar IPF. Diagnosed with LIP in her middle age, she is suffering from a very rare illness that has turned her life upside down. Like many of us, she has sought support groups but felt at times like she didn’t fit in.
Have you experienced any exclusion since your diagnosis? Do you feel like you belong here, or are welcomed into support groups? What groups/forums have you found most supportive? How can we focus on helping each other heal with unity and support?
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3 Replies
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I feel I belong here and am supported although my form of ILD, chronic hypersensitivity pneumonitis, is also rarer than IPF. There are a few other members here with CHP so I’m not the only one and my dad had IPF so I know what we have in common and what is different. I’m sorry that anyone feels unsupported and wonder if anyone has found more general ILD online resources that might help.
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I have just been diagnosed with UIP, usual interstitual pneumonia, in January 2022 and am now taking Ofev since April. That, in itself, has been a rough ride! I am/was always healthy and have never had any type of surgery until I had to have the lung biopsy operation. This has really shocked me and I have been racking my brain trying to figure out how this happened to me. I have never been a smoker but my Daddy was…I’m a retired elementary school teacher and I taught school for 35 years in Alabama and Georgia. It is possible that I was exposed to asbestos when I began teaching the mid 80’s. The only other thing I can think of is that I lived in a place for a year and half that was tested and had high Radon which is very common where I live. I’m just trying to wrap my brain around the “new normal” for me.
Any information would be appreciated.
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My four descriptive words for IPF:
1. Challenging
2. Motivating ( It moves me to know more and do more in a timely manner)
3. A Gift ( Not from my wish list/ however it has brought me many blessings and a better awareness of blessings)
4. Opportunity ( Not the one I was looking for, but one that will help me be more productive, find strength when I need it and appreciate all of the blessings past and present)
5. To finish this off I would call it an arduous trek that although it is solo, I am not alone. God and my family and friends are here to cheer me on/pick me up and keep me on focus. I love all of them.
Thanks for giving me this opportunity to share. I will not lose the good in my life to the last challenge, it will just be a exit strategy that I had not planned on, so on to the next plan !!
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