We asked you on Facebook to share what little-known illnesses you have and we had an overwhelming response. We want to share with you today a brave story by guest writer Ailsa Turrell about a disease she has that not many know about:
I have Ankylosing Spondylitis which I had never heard of before I was diagnosed with it. It has changed my life and not for the better.
Five years ago I would have described myself as pretty healthy with my only real problem being a painful bad back (which I have had since my 20s) and a touch of osteoarthritis in my hips and knees. Fast forward 5 years and my life has changed greatly. I am now a 67 year-old woman with Ankylosing Spondylitis and am in a lot of pain and having problems walking – some days it is a struggle to walk from the front to the back of my small 3 bedroom house and coming up three steps from outside to get into the front door feels like climbing Mt Cook. This is not how I planned to spend my retirement.
Although other joints can be involved, Ankylosing Spondylitis (AS) primarily affects the spine. In this particular type of arthritis, the joints and ligaments of the spine become inflamed. This can cause back pain and stiffness. In time, the bones may fuse together, making it difficult to bend and move. AS can affect other joints, and in some cases, it can damage the eyes, heart, or lungs. It is an auto-immune disease with lots of nasty side effects. Chronic inflammation can cause bones to fuse together, restricting your ability to move. If bones in the chest fuse, it could affect breathing. In some cases, inflammation also occurs in other joints, such as the shoulders, hips, knees, ankles, or heels. This can cause pain and reduced mobility. It makes it difficult to hold a position for any length of time e.g. raising your arms to brush or wash your hair or bending slightly to sweep or vacuum. If something falls on the floor it may have to stay there until my next visitor or until I feel safe to pick it up. Many AS people suffer from painful feet because of plantar fasciitis and peripheral neuropathy, some develop other auto immune diseases such as Chron’s. Fatigue is a major problem reported by people with AS. Fatigue may be due to the efforts of fighting chronic inflammation. Sleep disrupted by pain may also be a contributing factor of fatigue. People with AS often get inflammatory flares which means they go from being reasonably fine and mobile to being totally crippled with pain and stiffness. I have been shopping in a supermarket feeling O.K. and then suddenly crippled with searing pain and cannot move – the pain often lasts a week and then it dies down and gets better again. When people are fused they are generally unable to work and even simple things like getting into a car are difficult.
AS is hard to diagnose and many doctors believe that only men get it and usually in their teens or 20s. Medical text books say that there are ten men with it for every woman but my rheumatologist thinks the numbers are equal – it is just under diagnosed in women. It took 4 years from my GP saying she thought I might have it before I got a formal diagnosis. However, since being diagnosed (thanks to my fantastic GP), I have come across many older people and many women who have it. I think I have had it since my 20s. It is very under diagnosed – now that I know what I have, I can see that my mother also suffered from it (it can be hereditary), but she was never diagnosed with it. Treatment is often hit and miss – what works for one person does not for another and patients often find that what has worked for a few years no longer works. Nothing seems to work for the pain.
I think I was really lucky that my AS waited until I was ready to retire to flare up although I don’t know what set it off – there are days when I just want to stay in bed or sit on the couch and cuddle a dog. I really feel for younger people who are still trying to study, work and raise families. It is very difficult for other people to know the amount of pain we have or what our physical limitations are – I know it is hard for friends to understand that I can no longer walk my dogs or herd sheep or spend the morning walking around a shopping mall or drive very far or do many of the things I used to love. It is an invisible disease unless I decide to use a walking stick or walker. I am really concerned about what my future holds.
If you see someone like me getting out of a car in a disabled parking spot please do not attack us for not being disabled – we are, you just cannot see it.
Do you have a rare or unknown illness that you’d like to raise awareness of? Share your inspirational stories with us below or via our submission form: