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What I Didn’t Know Following My IPF Diagnosis
In August 2016 The Mighty first published a column by Amber Hosea, one of their writers/contributors. The column is called 7 Things I Didn’t Know Would Happen When My Health Got Worse. I wanted to share it with our forums community, because even though the illness this contributor has differs from pulmonary fibrosis (PF); much of the column is very applicable to us as well.
After being diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2016, I had no idea about all the changes that would follow as my lungs continue to decline. Very recently I wrote a column about how to navigate all the changes that living with IPF brings.
In that column I admit to being naive about the things that were about to change for me physically as a young adult living with a fatal lung disease. There were many other things I didn’t know as well, including social, emotional and mental changes. The attached column addresses some of those things, as the author seems to relate to how we feel as a patient with IPF, even though her illness is different. Here are the things she said that resonated with me most:
- I didn’t know I would be on an emotional roller coaster. One minute, I’m trying to stay positive and be grateful for what I am able to do, and the next minute I’m sobbing in the bathtub. It’s exhausting.
- I didn’t know I’d have to repeat myself over and over… and over again. I don’t mind answering questions about my illnesses. I think there needs to be more awareness for chronic illnesses, but no matter how many times I explain it, someone will still ask, “Are you feeling better?” or make comments like, “Maybe you should try exercising more and drinking more water.” I try to laugh it off, but I feel as though I should send out a greeting card that says “I won’t be getting well soon… or ever.
- I didn’t know I’d be alone. Don’t get me wrong, I have a supportive husband and a handful of friends who listen to me vent and really try to be there for me, but I’m alone on this journey. Having a chronic illness is no picnic. The days of spontaneity become a thing of the past, and you feel as though you’ve been reduced to a less fun version of yourself. Some people won’t be able to handle this new version of you, but try not to let that defeat you. There are people who will stick around and remind you that you’re worth the effort.
Can you relate to these things as well as a patient with IPF/PF?
What didn’t you know would change or happen as a result of your diagnosis? Please share with us if you feel comfortable!
- I didn’t know I would be on an emotional roller coaster. One minute, I’m trying to stay positive and be grateful for what I am able to do, and the next minute I’m sobbing in the bathtub. It’s exhausting.
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6 Replies
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Hi Charlene, thankfully I still have three good friends who try to help me get through this, the only problem is they live almost one hour away and I don’t have a car anymore so don’t get to see them much.My daughter tries but is not sympathetic to how I feel.
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Hi Sheila,
Thanks for your reply on this topic and sharing a bit about your experience with me. I’m really glad you still have those good friends who help you get through the tough times. It’s really hard for others to understand what we’re going through, sometimes I am convinced they try and other times I’m not unfortunately. Do your friends try to come your way and visit you, since you don’t have your car any longer? Not sure where you’re located if public transit might be a feasible option for you? I know it is important to maintain these friendships although not always easy. Hang in there and thanks for writing!
Charlene
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Hi Sheila: I can really relate to your feeling of being cut off because of distance. I’m one and half hours from the city, and live in cottage country-not many around in winter. I’m finding that because of the risk of infection I am drawing away from socializing. I’m not comfortable going shopping (thank goodness my husband is so capable) or especially to the nearest hospital for blood tests. I’m becoming a bit of a germ-a-fobe. I have to ask friends if they’ve recently had, or have a cold or the flu before seeing them, or having them over. It feels so invasive. Fortunately they now understand why. I’m even afraid to babysit my grandchildren! Such a bummer. Again, I thank my lucky stars for my husband who loves to babysit at their house. I can really understand how this disease isolates the sufferers. I hope your isolation won’t cause depression, as many of us tend to fall prey to it. Many Good wishes, Lesley
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Hi Lesley,
I know your reply was to Sheila, I just needed to chime in and say that I found it very helpful to read your reply since I really can relate. Socializing has almost become a chore for me now, and I’d much prefer to stay home on my own and embrace the quiet. Not only because it is less exhausting for me, but also because I too fear germs! Having to ask people whether or not they’ve been sick recently sure can feel uncomfortable (I have to do this with families I work with, and it never feels good) and it is emotionally tough for me to avoid spending time with my nephews due to them potentially carrying germs. This disease is unfair in every sense of the word, isn’t it? Hang in there and feel free to write anytime. I’m so thankful for this community of people who truly “get it”…
Warm regards,
Charlene.
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Hi Charlene – You speak so clearly what I have experienced and I try to alert my wife by talking it over and sending her a short video or two from youtube. Being apart from her 7 months is more difficult than this illness at least for now and we are not sure what God’s plan is at the moment but we do know He wants us to come Home and we are never facing this increasingly lifeless world alone. – SteveD
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Hi Steve,
Thanks so much for your reply and contribution to this topic thread. I am sorry you can relate to this, as I certainly wish it wasn’t IPF that caused so many of us “commonalities”. This is a cruel disease that the world can definitely do without! I cannot imagine how much more difficult this is to manage with being apart from your wife. I pray that you will soon be reunited in as good of health as possible, despite IPF. Hang in there and I sure hope you get to see her soon. Do you have plans of spending some time together over the holidays?
Charlene.
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