Neither I Nor Others Have Time for Chronic Illness

Neither I Nor Others Have Time for Chronic Illness

younger than 30

As I sit down to write this column, I am wiping away tears of frustration. I hope that getting all of my thoughts down on paper will help. I’ll be candid: I am angry at my chronic illness.

I don’t have time for it, and neither do the people who love me. And that’s just the way it is. The difference is that I have no choice but to deal with it, and I have to make time because it impacts every part of my life. I am angry about this. I don’t wish a chronic illness on anyone, but I think I am entitled to feel angry that I must figure out how to make time for a chronic illness in my life when others don’t.

As my IPF progresses, I wish I didn’t need help physically and emotionally, or that I could manage it entirely on my own. I wish there weren’t times of crisis, when something happens that sends me to the hospital and others become worried, upset, or anxious. Please remember that I don’t have the luxury of keeping the fact that I have been admitted to the hospital to myself. I can’t prevent others from having to worry. If someone sends me a message and I don’t respond, they are concerned that something has happened since I live on my own. If I could keep this from you and avoid having those who love me worry, I would.

Finally, what I wish more than anything is that I could do this on my own so that I would not have to burden anyone. But I can’t and I am sorry about that. I know that people have their own lives and things to deal with. I don’t need to hear how caring or supporting me takes away from that. Regardless of the intention behind sharing this with me, the impact hurts because I can’t do anything differently.

I need others to understand that if I could do this on my own, I would. I need others not to back away and stop communicating when things get busy. Because of my anxiety related to IPF, I assume you are angry or upset with me for needing you. That causes me to turn inward and avoid help altogether.

I also don’t need others not to say anything at all when they’re uncertain of how to help. I know that my disease can be extra work sometimes, and I appreciate everything others do for me. But no one feels the burden of my illness more than I do. Again, the difference is that I have no choice about making the time to deal with it. So, please be mindful of this if you are a caregiver and talking to a patient about how busy things are for you. It just heightens our guilt of needing you.

I am working with a number of extremely talented women on our management team to help others feel less impacted by my disease and to spread out the responsibility of helping me. I recognize that helping me is tiring, but I also am tired of feeling guilty about that because I can’t do anything differently.

Therefore, I am happy to put more work into developing a plan that alleviates some of the stress for others. Following are some of the things we’ve come up with: 

  • Broadening the circle of support: This is tough because, as a patient, it isn’t easy to be vulnerable (which I am when I feel unwell) with just anyone.
  • Creating a schedule and sticking to it: Of the people who want to help me, this means designating times when they can be present to do that. If something comes up, that’s fine, but remember, my need for help is still there. Please find an alternative to assist me instead of just canceling.
  • Being proactive: The responsibility is on me for this, and I will try to be as proactive as possible around times I need help so that people can know as far in advance as possible.

Are there other ways you distribute the caregiving that is necessary for you as a patient with IPF?

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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.

11 comments

  1. Sandy says:

    I live in a close neighborhood and I asked a neighbor to take my Christmas cards around when she does hers. I also asked another neighbor to drive me to the hospital where I get monthly infusions. My husband would do it, but he needs a break. I also have sisters nearby and ask for their support in picking up things, etc. anything to give him that break. I’m careful not to ask for too much in a short time as I don’t want to burn them out. I also use a service to stay with me once a week for four hours to help me out. My husband goes to the movies. I’m always afraid of falling so I can’t be alone.

  2. Hello, I have been reading your Blog and I understand how you feel. I am a widow and I have a little dog, My Companion. I was Diagnosed with this Disease going on 11 years ago. My Dr. said most people only live 4 to 8 years. I am on Oxygen 24/7 and CPAP at night I have been through so much in these past years and my Dr. Can’t believe I’m still here. I hate this Disease and But yesterday was my 73 Birthday and God still has me here for a reason just as He does with you and everyone else. I’ve been in the Hospital many times and ICU and they have called my Family in. I still get angry about this Disease. It takes everything from you and like you I don’t want to depend on others. sometimes we don’t have a choice. I now have a lot of other problems because of having to take so many steroids. I just take 1 day at a time. I would like to encourage anyone that reads this and has that aweful disease to just take your time and if you can’t do something DON’T. God Bless each and everyone. If anyone needs to talk my name and E-mail will be on here.

    • Prakash J. Lakhapate says:

      Dear Sylvia Gail Huddleston,
      Appreciate your fighting with IPF.
      When you are on oxygen do maximum possible movement of stomach. So that you will get maximum benefit of oxygen supplied. This should be done before breakfast or lunch or dinner.
      You may contact me for free guidance.
      plakhapate(at)gmail(dot)com
      Prakash J. Lakhapate

      • Thank you for replying to my post. When you say maximum movement of stomach, what are you talking about? I have severe back problems so I am limited. Please explain exactly what I need to do. Again I thank you for any Information that will help me.

  3. Francine risley says:

    This is exactly how I feel. Just because I fix my hair, do my makeup, I even get tattoo makeup, because I don’t have the strengthen to stand and put on real stuff.. the humor of it all. IPF is from the inside, If you say cancer, people get it or some other disease they can see. I struggle to be whole again. But that never happens.. I have had 6 caths and major heart surgery since birth. Was told I could never have kids, and I have 2. then beat the odds and was hit by a forklift.. Became disabled from that. But this IPF and PAH has defeated me..I can’t beat this thing. It is kicking my butt.. thanks for expressing what I try to explain to someone that does not know this IPF..

  4. Joyce Douglas says:

    Charlene, thank you for being so candid. Others who help you but don’t have the illness, just do not realize how vulnerable we are when we need help. We are really needing help and it doesn’t make us feel any less needy, but more guilty having to ask for your help. Please don’t make me/us feel like we are imposing on you and using up your time. We would give anything to not need you and just visit instead. That can’t happen. Thank you again for your posts. They tell our stories so well and of our feelings. Keep up the great work and we sure appreciate your truthfulness.

  5. katherine broach says:

    Reading these stories of your need for help, I feel so fortunate. Beginning my 5th year w/this disease and still on the well spectrum, I am able as I approach 80 to manage by keeping my life as simple as possible and depending on a helper two hours a week. I plan a lot around her time w/me, bringing in groceries, doing my laundry at our apartment laundromat, vacuuming, and taking out the trash. My helper is mechanically inclined and can do many tasks such as changing filters and some repairs.
    I live in a low income senior complex and every week a resident ends up in the hospital, then moves to rehab and perhaps assisted living or a nursing home. I live alone. My companion is an independent tuxedo cat who lifts my spirits considerably. I have family close by but they work full time and have a full schedule w/children. I try desperately to manage w/o calling on them. For me, meal preparation is the hardest w/clean up to follow, and just this week I’ve noticed how difficult standing at the bathroom sink for brief period of grooming has become. I like to remind sufferers that I have outlived the cough in hopes I can encourage anyone out there, particularly you young people with this disease. I am not on oxygen and my doctor recently told me my lungs are too good to qualify for pulmonary rehab. I’m wondering if others with this disease are dealing with AFib as I have this past year. I have worsening arthritis and stenosis pain but my doctor tells me IPF is not to blame since it is not rheumatoid. I cannot say enough about pacing ourselves. I accomplish nothing by overdoing since I end up in bed for 2 or 3 days. When I tell my daughter I feel guilty when I need help, she simply asks, “how’s that working for you?” lol

  6. Diane Fox says:

    Thank you for this thoughtful insight. My life is leaving me, little by slowly. I can only try to slow down the collapse with medication, not so much to live longer (I’m housebound now), but to live better. To feel just a little joy again. Thank everyone here. There is some encouragement in every post.

  7. ash says:

    I am sorry that all IPF sufferers going through such tough time; I hope with spheroid stem cells and other potential treatments, something good happens for people soon, and this horrible disease can be reversed.

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