Image of a woman that is split in half. Left side shows oxygen tank and walker, right side does not show any impairments.

Invisible Illness

No, Invisible Illness isn’t the name of of a disease. The term Invisible Illness represents any chronic illness or disease that that a person has, that is not seen by the human eye. Example: Chronic Obstructive Pulmonary Disease or COPD.

“You don’t look sick.”

For those with COPD, you probably understand why this falls under Invisible Illness. Maybe you have had people say you don’t look sick. I know it’s happened to me. I’ve been told “you sound good, so you can’t be sick today”. “You can’t have COPD because you aren’t on oxygen.” How about the look you get when you park in handicapped parking?

I used to get that with my other health issues too, however, everything is catching up with me. If I am out, people hurry to open doors for me, especially if I am using my cane. At the hospital or doctor’s office, I often get asked if I need a wheel chair.

Now people see my illness

It wasn’t long ago that I had an invisible illness. I guess it isn’t a permanent thing, for me anyway. Now people see: If I am moving too fast or far, I’m probably using my inhaler and doing pursed lip breathing. This happens if I get sob (short of breath); it seems if anything is going on, I get rosy cheeks; my eyelids can look purplish; if something is triggering allergies, my eyes swell, the right one anyway. With dizziness, I walk close to the wall or near something I can grab onto, if I am up and about, I will use my cane. I walk with a limp because of arthritis and if it’s a bad back day, I can’t stand straight. My husband reminds me to try to straighten my back which is good. I’m using my walker too. So, my Invisible Illness isn’t very invisible anymore. Personally, I prefer having an Invisible Illness. Yet, I remember the frustration when people didn’t believe I was sick, or even struggling.

I have talked with so many people who struggle with other people’s reaction to their invisible illness. It would be so easy to say ignore them. You see, it goes beyond that because people can be bullies. They can make nasty comments, actions too speak volumes. Those who struggle with a chronic illness are sometimes prone to depression. “A chronic illness is an illness that lasts three months or more” according to the U.S. National Center for Health Statistics. The treatment caused by others can affect a person’s depression and/or anxiety. Depression can be another Invisible Illness.

What is your Invisible Illness?

I’m sure that some of you readers can think of an invisible illness that you might have. You with COPD and more, what experiences have you had? Have your family members been persecuted too? Sadly, we can’t control other people. This is another reason why a support system can make such a difference. You would likely be talking with others who have experienced similar issues, people who understand and care.

We are here for you too, and we do understand. We would like to hear your experiences, if you too have an Invisible Illness.

What “invisible” part of COPD do you wish other people could see? Tell the community!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (11)
  • kilgorq
    7 months ago

    I have the invisible illness.Except I cough all of the time. I should invest in Ricola. I had a conversation with a co-worker today. I told him my throat always hurts. My chest is always congested. He told me “you should be getting better since you quit smoking”. I told him Close your mouth and plug one nostril. After you do that for a whole day tell me how you feel. Just try it for an hour. And see how you feel. His response was maybe I should read up on COPD. I told him, yeah maybe you should. The cough and congestion is part of the disease. Not to mention all of the other fun stuff that comes along with it. Like having a bad day because you ate too much and can’t get enough air because your stomach is too full. Or being hungry because you are worried about eating to much and being more miserable. in the last year I have had to cut my meal sizes in half or I have SOB really bad. I have toyed with the idea of buying one of those reduced oxygen training masks and giving it to the next jerk that tells me that its all in my head. Another issue I see a lot is people asking me to help move stuff around at work. Then not understanding why I have to go sit down for an hour after helping them for a few minutes. Another case for the Mask. The most frustrating part about this for me is people. People that are quick to judge without having the facts. People that just don’t understand and don’t try to understand. I am 48 and look like I am in my mid thirty’s. “You don’t look sick” is the most common thing I hear. Most days I wake up want to just stay in bed because just walking is difficult. I know that is the worst thing I can do but most days that is where its at. My last test I was at end of Stage 3. I am fighting the depression. I force myself to keep going until I feel like I just can’t move anymore. Quitting smoking and trying to get about an hours of somewhat strenuous activity every day helps. But it is so far from what I was 5 years ago. It is hard to accept that I am no longer going to be able to spend a whole day working on my projects. Or just watching myself turn into a couch potato. Add that to the crappy people I deal with everyday just makes me — Well you know what I mean. Another annoying comment I get from people is “Keep you chin up, it will get better” ARRG People are just so ignorant. I do appreciate the ones that have some compassion and that want to understand and do listen. Thats are about 1 out every 100.

  • Janet Plank moderator author
    7 months ago

    kilgorq I’m sorry that you aren’t being heard. Sadly that happens too often. You are welcome to share our copd.net address to him or give him a printout. You are welcome too. Being active is so important and it sounds like you are doing what you can.
    It’s hard to listen to those who don’t understand, I think we have all been there. Always remember, we’re here for you and we do know what it’s like.
    I hope you have a breathe-easy night/day.
    Janet (site moderator)

  • kilgorq
    7 months ago

    Thank You. Janet and Allyson.

    Today is actually a good day. The smoke finally cleared out of the valley and My breathing allowed me to Work in the garage for a couple of hours. Without struggling to much. I am am looking forward to getting to drive my Mustang for the next couple of months. Before the weather changes and the snow and ice comes. As for the rude people I just try to ignore them. The important people in my life are truly trying to understand. My wife, god bless her soul quit smoking to help motivate me to. We both have been tobacco free since April. Quitting smoking was the best thing I have done in a long time. My SOB issue are not as often and don’t last as long. Your support is very appreciated.

  • Allyson.Ellis moderator
    7 months ago

    kilgorq, I hear how much you are struggling with COPD. It is so hard trying to educate others on the complexity of this disease and being taken seriously when you “look fine.” You are not alone in that frustration! Eating challenges are something many in the community also struggle to manage. I thought this article series might be of interest to you: https://copd.net/living/overcoming-eating-challenges-part-1/ Know in this community you are surrounded by those who do truly understand. Please reach out anytime you need support. We are always here to listen! ~Allyson (COPD.net team)

  • kilgorq
    7 months ago

    Thanks. I will take a look at the cooking link.

  • jsimerly9
    7 months ago

    Yes I am toward the end of stage 3 with my emphysema and chronic bronchitis I have a disability license plate on my car and a handicap placard on the mirror I am on oxygen at night and almost there for 24 hours a day unfortunately I get the same looks and comments when I park in a handicap parking space people don’t understand COPD if they don’t have it and people at work also say well you don’t look sick and I’ll say try breathing through my lungs for the day

  • Janet Plank moderator author
    7 months ago

    jsimerly9
    It’s so sad that people are like that. Their sensabilities and sensativities can be very rude.
    Know that we are here for you and that we do understand.
    Janet (site moderator)

  • Allyson.Ellis moderator
    7 months ago

    jsimerly9, I hear your frustration! Handicap parking is an area where it seems so many feel the need to judge another person’s illness. It would be helpful to so many who live with invisible illnesses if others would trust that a doctor would not sign off on handicap access unless it is necessary. You are not alone in that struggle! Thank you for sharing and being part of the community. ~Allyson (COPD.net team)

  • pat02
    7 months ago

    There is so much about COPD, Emphysema, Chronic Bronchitis, Asthma and Bronchiectasis that I wish people understood better. Yes I have these four diseases, yes I smoked for a short time, but most of mine is hereditary and has been there since I was 8 years old, I am 70 now and have fought every day for my breath, some people think you should walk more, not use handicap spots, I have been cussed out and made fun of for so many years. Now I don’t drive anymore and when we go out people are very respectful when we use a handicap spot. Really I wish people could understand that not all disabilities are obvious and they don’t have an age group. Bless all the people who have helped me thru the years and all the ones out there with “Invisible Illnesses”..

  • Janet Plank moderator author
    7 months ago

    Hi pat02
    It’s sad that people don’t know or understand. Hopefully they will hear of those diseases and become more familiar and that more and more become educated.
    Yes, bless those that stand beside you and all of us.
    Thank you for sharing and joining us here.
    Janet (site moderator)

  • Leon Lebowitz, BA, RRT moderator
    7 months ago

    Hi pat02 and thanks for much for chiming in with your experiences and opinions regarding this ‘invisible illness’. We appreciate your input and comments about this article. Wishing you the best, Leon (site moderator)

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