For many people with ongoing health problems, life has changed since a diagnosis and they’ve had to adapt their work, adjust to medications and find ways to fit their illness around their lives. These are often the people you think of when you hear ‘chronic illness’. These are the people you meet through work, it’s ‘Janet – the one who needs a special chair’ or ‘Ahmed – the one who has a lot of doctor’s appointments and has to come into work a bit late.’ Within your social circle there are often people with asthma, depression, an auto immune disease you’ve only vaguely heard of, and they seem to muddle through life okay as long as they have their medications and support.
What people don’t see are the huge numbers of people who are so drastically affected by their disease, that they are absent from the workplace entirely. They drop out of social circles as they can no longer attend parties and events.
This is the basis for the Millions Missing campaign – a grassroots organisation by the ME/CFS community raising awareness of the millions of people around the world who are literally missing from their lives, often completely housebound or even bedridden.
The same exists for Lyme disease. Some people are able to continue their lives with adjustments, some desperately struggle on but with the constant fear that it might all collapse around them at any time. Some have completely lost their previous lives.
Here we take a look at some of the ways people’s lives have changed as a result of contracting Lyme disease through quotes and stories from our support group.
Annette continues to work 30 hours a week but struggles and is worried about the toll continuing to work is placing on her mental health. She’s waiting for an occupational health referral.
Sarah was a teacher and now runs her own tutoring business from home. “I teach around 3 hours a day. I can only do it as I don’t need to leave the house. It’s still really tough.”
A lot of people were physically fit and active, enjoying a range of outdoor pursuits.
I worked full time in a job I loved and climbed mountains/hiked in my spare time, which is how I got bitten……Now I’m lucky to climb out of bed. – Jeanette
Jill used to be a personal trainer and fitness instructor who taught 15-30 classes per week. She ran boot camps and fat-loss programmes, gave workshops and trained for indoor cycling. “I slowly gave up one class and one job after another as it became more difficult to function. Now I just exist each day at home not doing very much. I find little joy in my life except fighting to keep a roof over my kids heads.”
Many Lyme disease patients not only have to deal with the physical symptoms, but a raft of isolation, frustration and sadness at everything they’ve lost. They can also fear the future as healthcare becomes more stretched, friends drop away, and they question whether their condition will improve.
I had a future ahead of me! Now I don’t. I’m slowly being killed from the inside out! I’m scared for the future. – Charlotte.
Many patients are dependent on family members to carry out household tasks and help them with personal care, all the while relying on them financially.
Cherie used to be a trainer/assessor, enjoyed walking and an active social life. Now she can barely walk a few steps, spends 95% of her time in bed and relies on her son to do the chores.
Neelu was working as a part-time teaching assistant and also taking evening classes as she intended to become a maths teacher. Now she’s mostly housebound and relies on her retired parents to take care of her.
High flyers aren’t immune either.
I had a senior role in IT consulting working 70+ hour weeks, travelling loads and living out of hotels. On top of that I went to the gym 4-5 times a week, helped family, travelled and had an active social life. [I] now require help with basic tasks and most days am housebound. – Sarah
I worked as a research scientist and had recently been promoted to head of the team. Now, I can’t work at all and spend most of my time indoors/in bed. – Laura
Lyme disease also affects children, hugely impacting their education, well-being and futures.
” [I was a] normal teenage boy, liked going to school, going out with friends. Wasn’t very good at sport but loved running and was very fast , had won a couple of local races for under 16s. Went on holidays with my parents and loved fast rides and theme parks. Was just starting year 9 when I got ill. Had hopes for good GCSE and A levels and uni like my siblings. Now bedridden most days, manage to attend school about 20% of the time, reduced my GCSEs and know uni is a long way off. I would love to go to a theme park but am reluctant to go in a wheelchair”
Some people do improve hugely on early adequate treatment and return to their normal lives, but sadly there are many patients that fall through the net, never receive early treatment or simply don’t improve on standard treatment later on.
The first step to campaigning for better diagnosis and treatment is increasing the awareness amongst the public and in the medical profession of how devastating the disease can be and just how much people can lose.