THE doctor’s sick note pinned to the fridge with one of my toddler's Magna-Tiles says I'm under, ‘rheumatoid investigation’. Let me tell you this is not a detective agency that this dame ever wanted to walk into. Because of this, I'm also newly part of what I like to refer to as the ‘methotrexate club’ joining the 1.3 million people in the UK who take this chemotherapy medication in lower doses for autoimmune conditions.
As Groucho Marx said, ‘I refuse to join any club that would have me as a member’ But I was strongarmed into this one.
I've written before about my rare airway condition, idiopathic Subglottic Stenosis. In its most basic terms, this means scar tissue grows progressively in my windpipe and I'll need frequent surgery for the rest of my life to continue to open it up.
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When I say it is rare I mean it. For context, I had more of a chance of dying in a train accident than having this.
It might surprise you to hear that, now I have a fun new amorphous condition to juggle, my first instinct was to get straight onto Facebook. I joined the ‘Methotrexate Support Group’ which has 18,000 members and posted a simple question to the group. ‘Does anyone have any tips for the first dose?’ Advice flooded from America, Australia and all across Europe. Proven tips to make this often unpleasant medicine a little bit more bearable.
Incidentally, none of the practical, helpful advice was offered by my extremely excellent but clearly very overstretched doctor. I was given a leaflet and sent on my way.
A recent report showed that crowdfunding for medical treatments has increased dramatically since before the pandemic. In fact, figures by fundraising website GoFundMe showed an 84% increase in medical crowdfunding on their site launched in March compared to January 2019.
I have watched the rise of crowdfunding for everything from boob jobs to houseboats with interest, and as a working class woman, have frequently said to my husband that I would rather die than ask strangers for money for myself. But in this case, that is often the choice.
And I wonder if the prevalence of online peer-to-peer support groups, like Facebook groups, particularly for rare or chronic illnesses is also a form of crowdfunding. The pastoral support we might have expected from our medical staff is simply no longer viable under the current stresses of the NHS.
The truth is that sometimes you need information more quickly than the doctor can provide it. Certainly, none of my many, many appointments in the last six months has any doctor asked me how I'm coping emotionally or mentally despite having been housebound for months and having a history of depression and anxiety.
I’m sure there are times when online support groups can go wrong. I could end up down a rabbit hole sucked into an essential oils multi-level marketing scheme or convinced that gold dust infused water or a copper bracelet will magically reduce my white blood cell count.
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I do absolutely understand why every time I say I read something in an online support group my doctor’s eyes roll to the back of their heads even if what I am talking about initially came from The Journal of Rheumatology.
In case you’re imagining me as a ‘health Karen’ I am obsequious to the point of embarrassment with doctors, having been brought up to believe that they were gods. But I have learned to do my own research and advocate for myself with the help of online groups and it probably saved my life.
After my first windpipe surgery in Prague my doctor was adamant that I could either live with the quality of life I had, breathing through a hole the size of McDonald's straw and sleeping 80% of my life away, or consent to having a tracheostomy at the age of 41. I got home, asked for advice and within an hour I was hearing from other people around the world that this information was outright incorrect. They backed it up with research reports and personal anecdotes and because of them, I learned that not only could I be operated on but that he’d missed testing me for the autoimmune conditions for which I’m now being treated.
This group, as you might imagine for a rare disease group, is not big with just over 7000 members but it has formed itself into a valuable research tool. Doctors join this group to gather data from patients. Patients share the details of doctors who are qualified and experienced in the very specialized types of windpipe surgery and treatment.
Catherine Anderson, a fellow Subglottic Stenosis sufferer, who set up the group worked with the world’s best Ear, Nose and Throat doctors to create a ‘Rough Guide’ to the condition that I know has saved lives. She has also formed a research group, which I am now part of, which means that doctors and patients internationally can share information about this condition.
It is such a simple, cost-effective way to support patients and I'm grateful that I can post about the good health days, a whole half hour kitchen dance party to Motown with my toddler, or post a picture of my surgical socks when I'm waiting for my next surgery, explaining that I cannot wait to take my first sweet breath of air, and be understood.
I still refuse to join any club that would have me as a member but if I'm forced to I'm very glad these ones exist.
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