I read an article today where a teenager with ME/CFS says that she would rather have cancer.
“I really wish I had cancer because then they could give me some form of prognosis. People would sympathise, people would care and people wouldn’t tell you to shut up because they don’t care about your disability.”
Alex Wilson-Glab has seldom been out of her bed over the past 10 years and she suffers from the constant sleeping disorders that us ME/CFS sufferers are so familiar with. Her ME/CFS is so severe that she has days where she is unable to sit up, eat or leave the house. She says that she stays in bed, she can’t study and she is unable to celebrate her birthdays. The 18-year-old says she has to lie down for 45 minutes after taking a shower, and then she has to lie down an additional 20 minutes when she brushes her hair and her teeth. Does this sound familiar to anyone?
Alex became ill with mono when she was 8 years old and she has been sick with ME/CFS ever since then. Alex’s fear is that she will be the next person to die from ME/CFS.
“I don’t think I will ever recover completely. It would be better to die because people would listen.”
Another sad story of a young person’s life ruined because of ME/CFS. To read the entire article, please click the source link below.
Joanne Drayson says
Sandy I have commented once before on your site but due to recent IDSA hearings more information is more widely available on the possibility of patients with ME/CFS having Lyme Disease.
I posted this on the link you gave but will repaste here.
I bet you haven’t been properly assessed to see if your ME/CFS like mine was as a result of an ongoing bacteriological infection. After 4 years I was diagnosed with Lyme Disease and with long term antibiotics I am fully recovered. there is much controversay surrounding this illness seronegativity and persistent infection after long term treatment Steven Phillips presentation at their recent hearing is well worth reading for ayone with ME/CFS http://www.idsociety.org/Content.aspx?id=15026
For further information see http://www.lymediseaseaction.org.uk Through Eurolyme a chat line I am in touch with many patients 75% of which were previously diagnosed with ME/CFS and on antibiotics their health is improving. One young girl lost ten years to the ME/CFS diagnosis and then on correct antibiotic treatment she spends the winter months skiing by day working in a bar and partying into the night.
Also through Eurolyme I am in touch with patients infected in Australia including a doctor.
There is so much information available but you need to spend time doing your own research.
Good luck in finding what works for you.
Michelle Wordley says
TO the teen with CFS. I have often thought and said verbally that I would rather have cancer or a stroke or…. It’s something visible, something people can sympathize with. It is easier ot get help from the governemnt and the doctors – they all know and recognize cancer. It is easier to diagnose and easier to treat. It’s visible. But we have somthing that is invisible and it allows us to be an example for those who will follow someday. We need to be teachig, encouraging and never giving up!! CFS is like cancer in that it is a disease, but CFS can be far more debilitating. The worst I have found is not the symptoms, not the stupidity (allthouh that comes in a close second!!), it’s the lack of education in the world. SO many people don’t know and therefore don’t understand CFS and it makes it hard for people like us to get through the day when nobody understands and nobody seems to care. We need to look for support where we can get it. There are some great support groups on facbook and things like this website help!!! Do you know what I did? I made a CD of my favorite music to play on the bad days and as I read my bible I type up quotes that encourage me. ANd on days when I am depressed and really down I get on line and seek support and then I do things that I know will encourage me. It’s not the bad thoughts that will give us positive results. It’s the good thoughts that give us positive results. We can’t change our illness, but we can change our outlook! It’s not easy and somedays the most positive thoughts will be negative. Keep going!!! God loves you!!!
Alex Wilson-Glab says
It is me. I now have wireless internet, so I can use it on my laptop whilst in bed. My mum also got me some great new pillows (for my hospital stay, days after the article went to print, but also so I can ‘sit up’ in bed) lol.
I’d like to say: THANK YOU SO MUCH. You wouldn’t believe the verbal and cyber abuse/bullying I’ve put up with because the newspaper chose an emotive headline that was taken out of the full context. I’m so glad some other people (besides my closest friends, my mum and fellow ME/CFS sufferers I’ve met on Twitter) understand.
Yes, I said “cancer.” Yes, I’ve had 5 family members die from one form or another of it. Leukemia, etc. I spent over a week in hospital at age 9 being tested for cancer – I’ve been to oncology wards, I’ve met wonderful friends in hospital who’ve had cancer. In short, I understand what the disease does.
But if you say: “I have ME/CFS.” People will call you a liar, an attention seeker, a crazy freak whose disesase is all in their head, lazy, a malingerer, or just say: “AWESOME!! SO YOU CAN SLEEP ALL DAY AND PARTY ALL NIGHT?!?”
Consider how people would react if you said you had cancer. The outpourings of sympathy and caring. The offers of assistance and help, enquiries about treatment.
I put up with 2 weeks of this because of one word. I’m trying to raise awareness, and this is the result. Please try to spread the word about the severity of this illness. I can’t do it alone, but if I have to put up with bullying just so I get some support from the community and government, or get some research done, or FINALLY have Ampligen approved, I’ll suffer it. Not gladly. But I will.
Just so you know – it wasn’t mono. It was EBV, Glandular Fever. And I am not a slut or a whore. (Yeah, those are some of the names I’ve been called.) Who goes around kissing boys at 8?! My mum had it, then I got it, she recovered, I didn’t.
Thanks for being understanding. There aren’t enough caring people in the world anymore. If you have Twitter, I’m @thecabbagestalk, but DM me first so I know who I’m adding. I’d rather not post my email address in a public forum. I’m an atheist. I’ve had too many things go wrong in my life to believe in anything anymore, but I don’t mean any offence to anyone with religious beliefs. Take care. =)
Sandy Robinson says
Hi Alex, Thanks for taking the time to respond! I am glad that you stopped by to visit and to respond on the article that was written about you. After I read your story I thought to myself that you would probably get some flack for making the comment you made but those of us who suffer with you get it. Best of luck to you and I hope that life looks up for you soon!
Check mold as the cause of your CFS, we had invisible mold in our home causing mine and mercury fillings.