Living with a chronic condition called Ankylosing Spondylitis (AS) can be a challenge at times. Only you know how difficult it is to cope with the pain, stiffness, and fatigue. This can sometimes make you feel very lonely and frustrated. But remember, you don't have to go through this journey alone. The support of your loved ones can make facing this challenge much easier.
Why is it important to talk about this?
Simply put, talking to your family and close friends about what's on your mind and how you're feeling can help them understand you better. Only then will they know how to help you and how to support you.
Imagine you have a flare-up. You can't do your work or go out. If you don't say anything about it, people might think you're being lazy or just trying to get in their way. But if you say, "My AS is a little worse today, my back hurts so bad, that's why I can't come," they'll understand your situation. They'll also ask if you need help. This open communication is great for your relationships and your mental health.
Who do you tell? How do you start?
This is a very personal thing. Who you tell about your condition, and how much detail you share , is entirely up to you . You don't have to tell everyone about it. But it's important to tell the people closest to you in your life, the people you spend time with every day.
- Your partner: He/She is a big part of your life. It's important for him/her to be aware of your good days as well as your bad days.
- Family (parents, siblings): They are always willing to help you and take care of you.
- Close friends: They are the best people to tell you when you're sad or to explain why you can't go on a fun trip.
- A trusted manager or colleague at work: Sometimes this can be important to make a small change in the way you work, or to ask for help on a difficult day.
It can be difficult to start talking about this. Start by saying, "I have something important to tell you." Calmly and simply explain your situation.
How do you explain your situation?
Many people may not know about Ankylosing Spondylitis (AS). They may think that it is just a common back problem. Therefore, it is very important to simply explain what this condition is.
You can say:
"This isn't just a backache. This is a chronic inflammatory arthritis caused by a problem with my immune system. It mainly affects the joints in my spine. Over time, those joints become stiff and difficult to bend and turn. That's why I sometimes have trouble staying in the same position for long periods of time, or can't lift heavy weights."
Take them to the doctor together.
If you feel like it, invite your partner, family member, or close friend to come with you to see the doctor . This will give them the opportunity to hear directly from your doctor about your condition and ask any questions they may have. This is a great way to give them a deeper understanding of your condition.
| What to talk about | How to explain (example) |
|---|---|
| Symptoms | "I don't just feel tired. This is unbearable fatigue. And I also have a stiff back in the morning. That's why it's hard for me to get up early in the morning." |
| Physical Limitations | "Should we take the train instead of the bus? I have a hard time sitting for long periods of time. It's easier for me on the train because I can stand up a bit." |
| Asking for Help | "Can you help me lift these things up? It's not good for my back. It would be great if you could help." |
| Emotional Impact | "Sometimes I feel very frustrated with this pain. I feel sad when I can't do the things that everyone else does. At times like that, it would be a great strength for me if you could just talk to me." |
Don't forget about 'invisible' symptoms
One of the biggest challenges with AS is that there is no visible difference. No matter how much pain or fatigue you have, it is not visible to an outside observer. So talk clearly about these 'invisible' symptoms.
- Fatigue: This is not just tiredness. This is extreme tiredness that makes you feel exhausted and sleepy all day. Be sure to talk about this.
- Stiffness: Talk about stiffness in your joints, especially in the morning and after being in the same position for a long time.
- Mood Changes: When living with constant pain and challenges, it's normal to feel sad, angry, and frustrated at times. Talk to someone you trust about these feelings.
Share about your treatment and management
Tell your loved ones about your efforts to manage this condition. When they know about your treatment plan, it will be easier for them to support you.
- Exercise and Physiotherapy: Exercise is like medicine for AS. If you have a daily exercise routine, talk about it. They may be able to walk with you and help remind you to exercise.
- Medications: Tell us about the medications you take and when you take them.
- Diet: Your doctor may have recommended a special diet. Tell your family about it, and they can help you prepare meals that are suitable for you.
Asking for help is not a sign of weakness. It gives your loved ones a chance to be part of your life, to show you love and support.
Take-Home Message
- When living with the chronic condition Ankylosing Spondylitis (AS), talking about it with those closest to you can be a great source of strength, both mentally and physically.
- Who you tell and what you say is your personal decision. Tell the people you trust the most and are closest to you first.
- Be simple and honest when you talk. Explain what AS is and how it affects your daily life.
- Be sure to mention any symptoms such as pain, stiffness, and especially invisible fatigue.
- Don't be afraid to ask for help. It will make your relationships stronger.
- Discuss your treatment plan with your doctor regularly. If you need to, you can get their understanding and support by including a trusted family member in those discussions.
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