Have you recently been diagnosed with ankylosing spondylitis? Or have you been living with it for a long time? However, you probably know all too well the hardships, pain, and discomfort of living with this condition. You may feel like I'm the only one in the world who has it. Because it's a relatively uncommon and under-diagnosed condition, few people can truly understand what you're going through.
What exactly is Ankylosing Spondylitis?
Simply put, this is a long-term inflammation of the joints that mainly affects the spine. To be precise, this is a type of arthritis. In our language, we call it "joint pain." In this condition, the small joints in the spine become swollen, painful, and over time, they fuse together, reducing the flexibility of the spine. This is why you start the day with stiffness in the back in the morning. This is not limited to the spine, but can sometimes affect other joints such as the hips, shoulders, and knees.
One of the biggest challenges that comes with this condition is the physical pain as well as the emotional loneliness. The feeling of "I'm the only one who's been through this" can be overwhelming.
The challenges of living with this condition
If you tell a friend or family member, "I have a backache," they may think it's normal, a simple ache that comes with a little bit of exertion. But they may have a hard time understanding the constant pain , all-day stiffness , and overwhelming fatigue that come with ankylosing spondylitis.
- Workplace and daily tasks: Sometimes even getting out of bed can be a struggle. Working normally in an office chair, driving a car, or even doing everyday household chores can be a challenge.
- Social relationships: When you are constantly in pain and feel tired, you lose interest in going out with friends or attending events. This can lead to you gradually withdrawing from society.
- Psychological impact: All of this can lead to stress, anxiety, and sometimes depression.
But the most important thing I can tell you is that you are not alone . There are millions of people around the world who are suffering from this condition just like you, who can understand your experience. And there are many resources that can help you, give you information, and support you.
Where you can get support and information
Although many of these are foreign organizations, you can access information and support groups online, which can be a great help in managing your condition.
| Organization / Resource | What you can get |
|---|---|
| Arthritis Foundation | This is a non-profit organization that advocates for arthritis awareness and research. Their website has detailed information about ankylosing spondylitis. |
| Live Yes! Arthritis Network | This is the Arthritis Foundation's own online forum. It's a great place to connect with others living with conditions like yours, share experiences, and exchange ideas about treatments. |
| Spondylitis Association of America (SAA) | This organization provides a wealth of information, especially about ankylosing spondylitis and related conditions. You can learn a lot about how to manage the disease, exercise, and diet. |
| National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) | Part of the US National Institutes of Health, this website has a separate section dedicated to medically accurate and reliable information about ankylosing spondylitis. |
| Canadian Spondylitis Association: Your Stories | This is an online community. Here you can share your story, as well as read the experiences of others living with this condition. Sometimes, even reading someone else's experience can be a great source of strength. |
How to use these resources?
Although these websites are in English, you can use a tool like Google Translate to translate the content into Sinhala and read it. The most important thing is to join the online communities/forums that are available on these websites.
- Read other people's stories: Reading about how people like you are facing this challenge will help you feel less alone.
- Ask questions: These are good places to ask questions that are on your mind and get advice from others.
- Learn new information: This helps you stay informed about new treatments, research, and new ways to manage the disease.
Very important: While these resources can be a great source of information and support, you should always consult your doctor before seeking medical advice or making any changes to your medication . These websites are not a substitute for medical advice.
You don't have to go through this journey alone. With the right information and support, you too can manage your ankylosing spondylitis condition, reduce pain, and live an active life.
Take-Home Message
- Ankylosing spondylitis is a long-term arthritis condition that affects the spine. As well as physical pain, emotional loneliness is a big part of it.
- You are not alone in facing this challenge. There is a huge community and resources around the world that can support you.
- You can find reliable information and online support groups through the websites of organizations like the Arthritis Foundation and the Spondylitis Association of America.
- Reading other people's experiences and sharing your own can give you great mental strength.
- These resources are for informational purposes only. Please make all your treatments, medications, and medical decisions only under the guidance of your doctor.
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