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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