I Am Angry at My Body

Charlene Marshall avatar

by Charlene Marshall |

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mixed feelings, angry

younger than 30

Since being diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2016, I have tried hard not to be angry or ask the rhetorical “Why me?” questions. This isn’t to say I haven’t had moments of weakness when I am upset about being diagnosed with a life-threatening illness as a young adult. And it doesn’t mean I haven’t spent hours wondering if there was a reason I fell ill with a lung disease.

Like my doctors, I have yet to find a reason for or cause of my illness, and this angers me. I wish I could attribute the reason I got IPF to something. At least if I knew, I could spend time warning others where I went wrong in an effort to be proactive and encourage others to maintain proper lung health. This makes me angry: Why did this have to happen to me for seemingly no reason, when I was at the peak of my young adult life with everything falling into line?

In general, I am not an angry person and have tried to embrace the gifts that have come with living with a life-threatening illness. There are many, and perhaps highlighting them could be a future column idea. However, as of late, I find myself a little angrier than normal, and until this afternoon, I couldn’t really understand why.

I spoke with a colleague about why I feel a little angrier lately, and she pointed out that my body hasn’t exactly been cooperating in the last few weeks. I have had a few really tough weeks, and my body has been through a lot. Since I cannot be angry at anyone for my disease (because it is no one’s fault), the only thing I can be angry about is how I am coping emotionally with all of this or how my body is faring. Right now, it is not coping well.

Do any of you have weeks that are tougher than others physically, as your body continuously encounters or causes issues? If so, you can likely empathize with how difficult that is. In the last few weeks, I’ve endured:

Extreme mental fatigue

Specifically, I have trouble comprehending what people tell me or ask of me. In the last few weeks, it’s felt like I’ve been constantly asking for clarity from others or that they repeat their requests. I don’t mentally absorb words the first time I hear them. This has made work and personal interactions difficult, which is becoming increasingly frustrating.

A fall and subsequent back injury

The other evening, I chose to walk my dog around the street where I live because I was having a “good” day. I strapped my small oxygen tank over my shoulder, leashed up my dog, and started to walk her nearby at a pace I could tolerate.

I still am not sure how I fell, whether I lost my balance, over-compensated for something, became dizzy, or fainted, although I don’t suspect it was the latter. All I remember is heading toward the pavement face-first. Thankfully, I didn’t hit my chin, face, or head on the pavement. I broke my fall with my hands and one knee, scraping them pretty badly. I know the fall could have been much worse. Because I fell on the road and it was dark, a car could have hit me. I could have let my dog’s leash go, or I could have hit my head.

I am thankful it was not worse. But the next day, it landed me in the emergency room for pain management due to a likely torn quadratus lumborum muscle in my back. I now have intense narcotics to add to the ever-growing list of medications I already am on. I was frustrated this happened — my body is what caused my fall.

Shingles

Within the last two weeks of writing this, I was diagnosed and treated for shingles. A compromised immune system and prolonged steroid use create an ideal environment for shingles to start. This has been painful, tiring, and upsetting to deal with since everyone is fearful that they can catch it. (The virus that causes it has a low chance of spreading, but shingles itself is not contagious.)

I am mad at my body for enduring and causing all of these things in the past few weeks. And I don’t know what to do with that anger.

For other IPF sufferers out there, do you have any suggestions?

***

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.

Comments

cindy avatar

cindy

I too have this, can you tell me your blood type.. just curious to see if there is anything to that.. I am rh-0negative

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ash avatar

ash

Dear Charlene:

I am so very sorry, that you are going through this. When one hopes things don't get any worse, something like a fall happens and shingles. I am so sorry - I don't blame you for being upset and asking the question 'why me?'. At this point, I wish we all won lottery so we can have easier lives and deal with different illnesses that plague us.

I hope you are keeping an eye on UNC (chappel hill university) as to when their spheroid stem cells clinical trial starts. They are still working on research and maybe sometime this year if things proceed for them and if results are such that they would pursue human clinical trials.

Also, I read something about thyroid hormone, no human trials yet though.

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ash avatar

ash

I would also recommend, if you like spiritual discourses, or just discourses in general, to try out on youtube, sadhguru interviews. They may provide some insight into oneness and mind.

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Anita L Fabre avatar

Anita L Fabre

This may not be the answer you want, but hand that anger over to God! I do not have IPF, but my husband has dealt with it since 2014. It has dramatically changed both of our lives. It is not your fault, there is nothing you could have done to prevent it. God gives all of us crosses to bare in our lives. Now it's how you choose to deal with it. Your new normal will consist of frustration, the constant feeling of loss of freedom, loss of what you expected for your life, loss of good health. I can relate to that. I have seen, but cannot totally relate to how it must feel not to be able to breathe normally, to be tethered to a tank at all times, to not have energy or to be constantly coughing. I keep a journal to write out my frustrations, concerns, fear and sometimes anger. I go a step further and look for the little miracles that happen in our lives. I write down those things too. Things I would have previously missed. I also know a miracle can happen in anyone's life, I've seen them. Try for finding the positive and what you are learning by this experience. It's difficult but well worth making that effort. What good is God bringing to your life because of it? Hope you have some great support! If not, find it. Prayers are with you as well as all others dealing with IPF. Anita

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Andy Messner avatar

Andy Messner

Charlene,
I can identify with you. I am 59, last year I was diagnosed with IPF. Even went and had an invasive lung biopsy to prove it to myself. Never been sick in my life (other than the usual cold, etc). I was always the one to go to the hospital to see people, not be a patient. Anger set in. Why me. What did I do. Why can't they figure out what caused this. Why can't they cure it. Well enough. No answers, so time for me to move on. I'm dealing with it and how it has changed my life, not to mention my wife's. Stinks. My anger is gone, so is the depression. I now look at life differently, I cherish everything I have, the times I have with my family, etc. Hang in there, and trust there is a plan for you.

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ernst jan avatar

ernst jan

I am happy every day i have with my family i have IPF i am 56 years old ,

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MOaishia avatar

MOaishia

Charlene, This resonated with me so deeply. I just turned 40 and was originally diagnosed with ILD in 2015 but just diagnosed as IPF in December. I understand how you feel cause I feel all of this as well. I stay positive and hopeful the majority of the time but I do fall into this area of fear and "why me". It just makes no sense to me, and I am still processing so much.. Much love and light to you Charlene!

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Charlene Marshall avatar

Charlene Marshall

Hi Moaishia,

Thank you so much for reading my column, and for reaching out with details about yourself. I appreciate hearing from everyone living with IPF, but especially young adults, as with our demographic, it is so rare to be able to share the experience with someone else similar in age. I'd love to chat more with you about your experiences of living with IPF as a young adult. Would you be willing to join the new PF forum at: http://pulmonaryfibrosisnews.com/forums/ there is a group there specifically for young adults and it would be so helpful to get a conversation going about how we manage living with IPF. Maybe we can help each other process!

Sending you much love as well and best wishes on this journey. Please feel free to connect any time!

Sincerely,
Charlene.

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