On Wednesday November 20th we celebrated World COPD Day around the world. On the same day a patient friend posted in a COPD Patient FB group. When I read this post it brought a tear to my eye. Not just because of the outpouring of frustration and desperation in her message, this patient spoke for the majority of COPD patients.
Patient’s Post
“We need a way to raise money that would go towards research for a cure for copd. I don’t want a vest that tells me I am not breathing well.. I want a CURE. I don’t want a new inhaler that does the same old thing as my old inhalers. I want a CURE. It has been 19 yrs.. and I don’t see anything closer to a CURE then I did then! Sorry if I sound angry,, but I am tired of raising “awareness” and not doing something about the disease! I post things about COPD,, people that have it will share it. My friends that don’t have it dont share it,, what good does that do? Do we have a place to donate money that will actually go toward finding a cure? The Copd Foundation spends most of their money on awareness. I am AWARE of it.. 95% of the people on my friends list are AWARE of it.. and probably 100 people on my friends list are DEAD because of it. We need a CURE! 16 MILLION of us need it! 165,000 people that will die of it this yr need a CURE! What about the over 1/2 million people in the next 5 yrs? THEY NEED A CURE! If I was well enough I would become a patient advocate to go to Congress,, but I would most likely get kicked out. Because I am tired,, I am tired of having a disease that people think I deserve, I am tired of having a disease that Congress turns their back on. I would not look like the healthy people on the tv commercials,, I would be wearing my oxygen and I would tell them,, I have a DISEASE and it is KILLING me and so do MILLIONS of other people! They do not deserve to die”!
This post made me have a good long think about the plight of COPD. If I was to be brutally honest, as a COPD patient you feel like a criminal who is being punished for committing a horrible crime. Your sentence is to slowly suffocate until your last breath has been spent. The reality is we probably made a poor lifestyle choice, fell victim to environmental factors or were born with a genetic abnormality.
For this crime, we are lumbered with a stigma. A stigma which crosses all demographics of society. From the uninformed public to doctors who believe we did it to ourselves and because of this, we don’t deserve the same standard of care as others. If you’re a patient or carer reading this, you’re probably nodding your head. Most patients have experienced this stigma, for those who haven’t, it’s only a matter of time.
My patient friend talks about being tired, tired of the stigma, tired of raising awareness, tired of government inaction. As patients we are encouraged to join patient groups and become advocates, so we can raise awareness for our disease and attract more funding for research. I’ve been an advocate for nine years and have organised countless fundraisers. I have raised money for lung organisations in Australia, United Kingdom and the United States, as have many other patients.
But for what? We don’t see any new medications, just old ones delivered differently. Research is appalling, especially when compared to the “popular diseases” and pulmonary rehabilitation programs can be hard to access. We don’t have celebrities championing our disease and to be perfectly honest I’m disappointed with grants given to researchers to research dead ends!
So here I am, about to embark on yet another fundraising campaign, to push myself physically and mentally in the hope I can raise money for research. Why should I bother? I’m tired, like many advocates. I am tired of asking companies for money, I’m tired of companies undervaluing what I and other advocates do. I’m tired of being asked to test devices and to make favourable comments, only to be told sorry we can’t donate to your fundraiser after spending tens of hours of my time trying to help them. I’m tired of companies making millions out of patients and giving little to nothing in return. I hope those companies are reading this and feeling just a little guilty.
If you are a professional working in the respiratory community, I would ask you to consider your role. Not just your work role, your role as an advocate. Whether you agree or not with my rant, advocacy helps everyone, and everyone needs to be an advocate. So now I have vented my frustrations just like my patient friend, it’s time to dust myself off and get myself motivated to raise those much need funds. I just hope whatever I raise its used wisely!
Tired Frustrated and disillusioned brought tears to my eyes. That’s exactly how you are made to feel. Nurses in some hospitals that don’t specialise in pulmonary conditions can treat you like your invisible. It’s a terrible disease and fighting at time. I have been on oxygen 24/7 for the past 12 months and no longer have any urge to go out socially anymore.
Interesting post Russell by the patient who is tired and fed up.
I was diagnosed in 2003/04 after a lifetime of a poor lifestyle choice. It changed my life for the better !!
I educated myself, got fit and continued my life in an upbeat way.
Yes I wish this condition, which you have to agree is very complex were better researched and better meds tho halt the progression.. All we can do is push for these things to happen. Rarely feel sorry for myself, life could be a lot worse despite lots of things in the life I live. Thanks for all you do.
Thanks Pauline, you always make me smile 🙂
I agree not interested in raising awareness interested in a cure nothingote nothing less
Great post!
You are obviously doing your bit (plus some) to try progress/advance the treatment options and long term outcomes of all COPD patients, yet those who are best placed to do much more are seemingly doing very little.
Good on you for doing what you have done and continue to do, but yes l understand your frustrations…
Myself, l am looking after an Uncle who has “End Stage COPD” although we tend to refer to it as being “Very Severe COPD” as the words “End Stage” are a little over the top and do little more than cause people such as my uncle to panic and become much more anxious about his health conditions.
I wish you well with your fundraising and awareness campaigns and l also wish you and other readers all the very best with their own health battles and challenges.
All the best, cheers!
Hi Russell,
I fully understand everyone’s feelings towards the lack of help and research. I know when I was diagnosed back in 2012 the lady specialist said “yes you have COPD caused by smoking” and then smirked as if to say I deserved it. I also feel like I’ve been put on death row and nobody gives a jot. The trouble is minimal research, minimal trials, and big pharma isn’t interested in a cure. There is no money made by curing people. We need people of importance to fight in our corner celebrities, sportsmen and the like to step out of the shadows and bring awareness and sponsoring to the plight of the sufferer. Should a lifestyle choice sentence a person to death. I don’t believe so!
2015 had a BKA from PA Disease. Few years later. I have COPD. Before the COPD, strangers looked at my colorful Prosthetic, open doors so friendly. Than COPD with this Stinking hose up my nose. That is all they see. Different looks. So obvious. I smoked but also had a hair salon for 31 years with 3 Employees and cans of hairspray spraying before the spray pumps. But they just see the hose up my nose!!
Hello Russell,
1st, I would like to thank you for what you do. I read about you the other week and honestly, I couldn’t believe it. I’ve had COPD for around 15 years. I’ve been having a tough time of it lately. Honestly, my doctors are sub par. It’s like no one cares. Yes, I get the whole, you did this to yourself stigma as well. I also had lung cancer in 2018/19. I had a lobectomy and survived it. I considered myself fairly active until I read about you. Haha. I walk fast. I’m super busy on the weekends. That’s about it though. After reading about your amazing accomplishments, I started working out last week. Push-ups, curls, triceps etc. I was never a runner throughout my life. Your story gives me hope. It gives me light. According to all the doctors from they way they present things is, there is nothing you can do, except wait around, take your meds until you die. I want to become more active and workout regularly. I”m starting off slow and working my way up to a more normal workout routine. From the bottom of my heart, I thank you. You gave me new perspective on this disease. God Bless you Russell. I am so grateful I found your story and website. Cheers.
Good for you Michael. Keep moving!